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Remarkable World Commentary Episode #13: Interview With Dr. Kirk Adams, Renowned Blind Advocate, Consultant and Speaker | Donna J. Jodhan | November 1, 2024

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Contenuto fornito da Donna J. Jodhan. Tutti i contenuti dei podcast, inclusi episodi, grafica e descrizioni dei podcast, vengono caricati e forniti direttamente da Donna J. Jodhan o dal partner della piattaforma podcast. Se ritieni che qualcuno stia utilizzando la tua opera protetta da copyright senza la tua autorizzazione, puoi seguire la procedura descritta qui https://it.player.fm/legal.
In this episode of Remarkable World Commentary Donna interviews Dr. Kirk Adams, a leading blind advocate, speaker, researcher and consultant, about his journey and insights on advocacy and employment for people with disabilities. Dr. Adams shares his early experiences of losing his vision due to retinal detachment and the impact of high expectations and specialized skills on his success. He emphasizes the importance of community, leadership, and self-advocacy. Dr. Adams discusses his PhD research on successfully employed blind adults, highlighting themes like compensation, internal locus of control, and the need for accommodations. He advocates for joining organizations, volunteering, and leveraging unique experiences to succeed, either in the workforce, or in entrepreneurship.

RWC Episode 13 Transcript

SUMMARY KEYWORDS

blindness skills, high expectations, internal locus, parental influence, spatial relationships, PhD insights, employment challenges, leadership development, community involvement, volunteer work, entrepreneurship, disability strengths, self-advocacy, accessible technology, transformational employment

00:00

Music.

00:12

Greetings, Donna J Jodhan, LLB, ACSP and MBA invites you to listen to her bi weekly podcast. Remarkable world commentary. Here, Donna shares some of her innermost thoughts, insights, perspectives and more with her listeners. Donna focuses on topics that directly affect the future of kids, especially kids with disabilities. Donna is a blind advocate, author, sight loss coach, dinner mystery producer, writer, entrepreneur, law graduate and podcast commentator. She has decades of lived experiences, knowledge skills and expertise in access technology and information as someone who has been internationally recognized for her work and roles. She just wants to make things better than possible.

01:06

Dr Kerr, it's an honor and a pleasure for me to be interviewing you. I've heard a lot about you as you know, I live in Canada. I'm a Canadian advocate, but, you know, we get a lot of news from the United States on advocacy and everything else, and I am just so delighted to be interviewing you. So are you ready?

01:28

It's a pleasure. Yes, I'm very ready.

01:32

So, Dr Adams, you lost your vision at a very early age. How has this helped to shape your approach to education and advocacy.

01:46

Yes, My situation is somewhat unique, and I was born sighted, and had full vision until I was five years old, and I was in kindergarten, in public school, and my retinas both detached due to hemorrhaging of some blood vessels in my eyes, the pressure detached the retinas, and it wasn't wasn't detected until detachment was happening. So I had an emergency retinal surgery, and then a series after that, but I essentially became totally blind within just a couple of days. So it was a very, very rapid transformation, and that resulted in a couple of things. First, my my parents were told they were young. They were in their mid 20s. They were told that I could not come back to the neighborhood school, that Blind Children and Deaf children needed to go to the state residential school. And we live north of Seattle, and my parents visited the Washington State School for the Blind in Vancouver, Washington, and were not pleased with what they saw there. As far as academic activity, they were both teachers and I had my retinal I was referred to a retinal specialist in Portland, Oregon. Someone there said that Oregon State School for the Blind was great, and they visited, took me, and I remember visiting, and they thought it was great, and I thought it was great. So they moved, quit their jobs, and moved the family. So I went to school for blind children for first, second and third grade, and I got three things there that later on in life, as a researcher, I discovered our strong predictors of successful employment and thriving as a blind adult, right? And one of them was the acquisition of blindness skills, and I was totally blind, so there was no question, did I need to learn braille? Did I learn need to learn how to travel safely and independently and confidently with a long way cane, right? Did I need to learn? They call it keyboarding now, but it was typing then. Did I need to learn how to type on a typewriter so that I could go to public school and succeed in public school so I got my blindness skills down, rock solid as a 678, year old. And you know, I know now through research on my own research on for my dissertation, that you know the specialized skills related to disability are essential for for thriving as an adult with a disability. So no matter where a person that is that in their journey, you know, the stronger their their specialized skills can be, the better. And that that is exemplified in a concept called the expanded core curriculum, which the expand American Foundation for the Blind and Dr Phil Han developed so many years ago. So, but it basically said a blind kid needs to learn everything the sighted kids need to learn, plus nine other things, which is assistive technology, orientation, mobility, self advocacy, Braille, etc. So that was the one thing, the blindness skills, then the other. The other thing was high expectations, and that the school held high expectations for all the students. I was there with 120 other blind kids were expected to be performing at grade level. My parents were teachers. My dad was a high school basketball coach. They had high expectations of myself and my younger brother and sister, and so we see that not every blind kid is born into that situation where people hold high expectations of them, and that can lead to many problems that, including internalizing those, those low expectations, over protectiveness, those, those types of things. So I got I got my blindness skills, I got my high expectations. And then the third thing was a strong internal locus of control. And that means that you feel just deep in your deep in your bones, you know that you can overcome obstacles. You can forge your own path. You can accomplish what you want to accomplish. And that's opposed to a an external locus of control, where you where you believe things are happening to you, and there's not much you can do about it. And so I was, I was given those three things, and you asked, not so super long winded way to answer your question. But as far as informing advocacy, it's like understanding that that not everybody was given those things, that so people, some people are different parts of the blindness journey. Some people haven't had opportunities to acquire those skills. Some people have lived with low expectations of them offered to them. Some people haven't had those opportunities to develop that strong internal locus of control. And how and how do we ameliorate that? How do we dismantle that?

07:25

Would you say that that your parents, like, you know, because of having such great parents, that was a very large influence, I played a large influence on how you structured yourself, and how you structured your abilities, capabilities, you know, in moving forward and seeing the world in a different light, in that, you know, we are not all fortunate to have great parents to influence, right? I had great parents, and I am here today because of them. Would you see that, that having had terrific parents helped you out,

08:02

then I'll, I'll say terrific with a with a caveat. So they, they were terrific in some ways, in that at they had those high expectations of me. They expected nothing less than a on a report card. They expected me to do family chores. They expected my dad was a coach, expected me to be involved in athletics and expected me to be involved in extracurricular activities. They did not provide a lot of psychosocial support or kind of empathy around how challenging it could be. I grew up in small towns in the Pacific Northwest, I was always the only only blind kid in my school. The teen years were particularly rough, as you know, in my towns where I lived, when kids turned 16, they got driver's licenses,

08:55

they usually got some sort of a job.

09:00

So those, those things were challenging. I was pretty, pretty isolated. I would say pretty I'd say in a grief, grief cycle. When I was 6789, 10 years old, I think everything was pretty okay. I experienced her, you know, I was experienced some bullying middle middle school. We were not connected with any blindness organizations. I did not know any other blind people. No, I didn't have any blind adult role models. My parents had never met a blind person before. My retinas detached. They knew me, right, but I would say terrific. On some fronts, they did the best they can. They did the best they could. On some of the other aspects, i. I would hope that a blind child today, if they were fortunate enough to to be born into a family with the resources and structure, would use things like the internet and do research and, you know, connect with other blind people and find some some community, which I certainly did.

10:21

So it sounds as if you had to summon your own inner strengths to deal with the expectations of your parents, and somehow you managed to navigate rough seas and to be able to be where you are today. Would you agree with that statement?

10:39

Yeah, I'd say so

10:43

couple things that came to mind. I think reading. I just was an avid reader. I was hospitalized a lot. I had a number of eye surgeries between age five and 12, and I would, this is before laser surgery. So they they'd actually go in there and do things, and then I'd have to lay a mobile one of bed for 10 days. And so I became just an avid reader. So I just read and read and read. And that just opened up a world for me, and gave me, gave me some of those role models, you know, on the pages. So I think reading was super important. And then I think as young kids often, do you know, adopting kind of heroes. My My family was really into sports. So sports heroes like Wilmore Rudolph, who had disabilities related to being in a childhood house fire, you know, became world champion track athlete.

11:56

People like that come to mind.

11:58

So it sounds as if like, despite, you know, the high expectations from your parents, you developed your own strategies to deal with, you know, like being the only blind person in your neighborhood or at school or whatever, you developed your own strategies to deal with all of this. Right? Would you say yes? I'd

12:19

say some consciously, some unconsciously, yeah,

12:25

I'd say just associate,

12:29

which hasn't, hasn't, always served me well as an adult. You know, the ability to kind of shut off the emotions, kind of while you're, you know, while all myself off from some of the more distressful things.

12:43

It's not an easy world to navigate, sir. It's very difficult when you know you're on your own. You have parents who are really expecting you to do well. You want to do well, but you know, there are things that we all have to deal with in many ways, right?

13:02

Yeah, yep, and the indomitable human spirit.

13:07

And again, I think being a kid,

13:10

I think it's a whole different ball game. If you've lived into your adulthood as a sighted person, then you become a blind person. I, I, I know, just from speaking with people, what a different experience that is from what I have, because children are so adaptable,

13:28

curious. Do you remember anything about the sighted world? I know you lost your sight at age five years old, but do you remember anything at all that could have helped you? You know, could have been a reference for you to build on, I

13:44

think probably, probably some spatial relationships. I don't remember colors if you if you say red or blue, I see in my mind the braille characters for red and blue. I don't I think mountains trees, like, I say my dad was a basketball coach. I was like, in high school gymnasiums, which kind of big open spaces, parks. We were pretty outdoors family, so out in boats on the water and on the beach and things like that. So I haven't dug into it formally or scientifically, but I but I think some of those concepts of spatial relationships that are are internalized have been helpful to me, especially around orientation and mobility. I have pretty good on animals, as far as being plunked down at a in a hotel or a conference center or an airport or somewhere, and, you know, not, not, not taking terribly long time to get oriented to the space and being able to navigate through structured discovery. And I, I think some of those spatial relationships that. Are deep, buried deep down there the subconscious somewhere have been helpful, because

15:05

I've been told that I was born with little or no vision and then got a whole whack of it when I was a teenager. But I've been told that sometimes those who are born with vision and then they lose it. It's a difference between them and someone who was born with little or none. Would you agree with that?

15:25

Again, not scientifically based, but just from talking with people and observing people. I'd say so, okay, all right,

15:33

how has your PhD in leadership and change influenced your approach to advocacy and organizational management.

15:47

My dissertation work. My dissertation is called journeys through rough country, an ethnographic study of blind adults successfully employed in American corporations. So I interviewed blind people who self described as successfully employed at name brand companies that you would all know, Microsoft, Amazon, Apple, Google, Facebook, Chase, Bank, AT and T, etc, etc. And I just gained so many insights from people reading the literature reviewed in order to situate my research in the in scholarship. I read every article published about blind deployment over the past 20 years, so I got a very deep grounding in in the research and the realities. And it's a very complex fact that in the US, only 35% of us are in the workforce, as opposed to 70% of the general population. And that number hasn't changed much. No, it's a complex set of problems which don't, don't lead to easy, easy solutions. But I, I read the academic studies and the research and the data, and then I talked to the people, and I confirmed a lot of what I read, but, but gave me some some new insights. And, you know, there were nine themes that came out of it, but the first and foremost was when asked, you know, your your describe yourself as successfully employed. You know, what do you base that on? And everyone, in some form or fashion said, their compensation, their salary, what, what they were earning? Okay, all of them had that strong internal locus of control that I talked about, that I got at the School for the Blind in Oregon, but many of them attributed that to an experience or series of experiences, mostly in the teen years or or childhood into the teen, maybe early 20s. A lot of it had to do with something physical, outdoors. One person who'd been a senior executive at a telecom company for 40 plus years. Her story was that she and her 10 year old, when she she and her twin sister was cider were 10 or their parents sent them to a sleepaway camp, and when it came to the horseback riding, you know, the counselors told the blind girl, no, no, you can't do the horse riding. That's too dangerous, you know you're gonna have to sit here. Yes, and that night, she and her sister got stuck out of the cabin and got a couple horses out, went riding, and she just remembered the exhilaration, the freedom of being with her sister and the night riding the horses. And another person was a young, 1213, year old boy living in New York City and the neighborhood, boys would all ride their bikes and do these bicycle tricks, you know, jump off the curb and ride the bike and stand up on the seat. Yeah. So he, you know, he did that, ended up in the emergency room more than once. Oh, my goodness. I often, I often, tell parents of blind kids, you can gage what a good, how good of a job you're doing as a parent of a blind child by how many times you need to go to the ER, but another person who was denying her blindness and not using a cane and how to had a bad fall. One wandered into a construction site and fell down some stairs and got pretty badly injured, and she ended up going to a blindness rehabilitation center where they took her rock climbing and snow skiing. So everyone had. Something that gave them that sense that they could overcome and could be creative and could forge their own, their own path. And then, you know, everyone talked about the need to have knowledge, skills and abilities. You had to compete with everyone else in the workplace, and kind of like that Hispanic core curriculum, you also needed to be better, smarter, faster than everyone else, and then everyone expressed disappointment, and that was the theme that didn't come out in the research studies that I read, because they were really data based. And there's not a lot of graphic research out there, but everyone expressed disappointment that people who were less senior than them, had less knowledge, skills and abilities, were promoted beyond them, that there was no one above them on the org chart with a visible disability, that they were the only person in their organization with a disability who got that far, that they had to keep fighting for accommodations all the time, that more than once people talked about they came in one day and the company had changed some system, and they hadn't taken accessibility to an account into account, so all of a sudden they couldn't do their job. And you know, they have to keep fighting over and over again for accommodations and accessibility. So so everyone had had that disappointment. So I would say the way my Ph D has helped me as a couple of things. It's the PhD in leadership change. So I studied leadership, and I read a lot about leadership and understanding the various forms leadership can take and how important leadership is. If anything truly transformational is going to happen, we need leadership, and that has led me to really be passionate about developing, helping develop, supporting the development of blind people as leaders. And then I think the other thing was just the grounding and the reality of people's situation. You can read these articles and these data sets and these studies and these comparisons of of data, but then when you really talk to people and hear about their lived experience, it just really establishes a deep establish for me, deep, and again, deep in my bones that these problems are really challenging, really complex, really difficult, and it's going to take a lot of persistence. It's going to take a lot of collective action. It's going to take a lot of alignment

23:03

and

23:05

an understanding that in order for us to make anything really significant happen, to change some of these numbers, we're going to have to get government, corporate, nonprofit and the community and individuals aligned

23:26

and rowing in the same direction.

23:29

So would you say that

23:33

there is a glass ceiling that we have to crack, that we have to forge through these, this, this so called Glass Ceiling. I you know, my personal opinion is that they do exist. But how do we do that? And I think you just said it, it's getting everybody to grow in the same direction. How can we do this? How could we influence government? Is it like strength lies in numbers. More legislation like I know in Canada we are still fighting because, yeah, you know, we, we enacted the accessible Canada Act in 2019 but I don't think much has changed here in my country. What would be your advice then to, you know, the younger folk coming up, you tell them, you know, there is a glass ceiling that we have to crack and break. What can we do?

24:30

Well, I think glass might be a little weak of a metaphor. I think it's stronger than glass. Yes. I mean, if you look at boardrooms and C suites, you know, you see some women, you see some people of color. You really don't see many people with disabilities. I was talking to a gentleman here is a wheelchair. You. Or he's the head of a organization called Arts Fund here in Washington State, and they fund about 700 arts organizations, and they did a democratic traffic survey of the 700 organizations that they funded, but less than 3% of their senior staff or board members were people with disclosed disabilities. So if you if you look at demographics, you would say about 15% of the working age population in the US have disabilities. And then when companies report out on the numbers of people with disabilities they employ, it's always one and a half to 4% so there's a lot of people with disabilities out there who aren't disclosing. Disabilities that aren't

25:49

they are free to disclose. Yes,

25:51

yes, yes, yeah. So you know, 70% of disabilities are not visible. So you know, ADHD and anxiety and depression, neurodiversity and all those things. So I I think again, no simple answer, Donna, but I think it's based in community, and we have so many wonderful tools now, with the Internet search engines, to find and develop community. So to find those leaders who have influence, have a career, have social capital, who have a disability, to encourage and create environments where people can disclose disabilities, to find other people who share some things in common with you around your disability experience, if you're a parent with a disabled child, to find other families have children with a similar disability, especially some that may have trodden the path before you a little bit, have learned some things they can share. So so I think it's again about aligning those things, the government, the corporate, the nonprofit in the community, but I think it's really, really hard to do that at a macro level all at once. I think as individuals, our our best strategy is to be involved and do that through a community framework. So join something, but attend things, committees, meetings, volunteer to be in leadership positions for young people. I tell them, you know volunteer, because the research shows that volunteer work is just as strong a predictor as paid work as a young person for future employment success. So you know, there's a there's an association, a society, a group for any interest, whether it's virtual or a person or a hybrid that you can find on the internet. So I say, join something and Volunteer. Volunteer one, one definition of a leader, I like, is anyone who's willing to help right now. So well, volunteer for that, that committee, lead, lead something start out small, if, if you need to develop those skills. But I guess that's a bit of a halting answer, because there's, there's no easy answer. But I think find those allies, find those elected officials who have a disabled child or disabled brother here in the United States, the senator from Iowa, Tom Harkin, who's retired now, was a great disability advocate leader and really drove a lot of legislation. He had a brother whom we dearly loved who was severely disabled. As an example,

29:07

find those people within companies

29:13

who have a disability. Talk about it. Think about going if you're if you're looking for a place to work. You know, I tell people, look, look at the company. See if they include disability in their statements around diversity, equity, inclusion, if they're big enough, find out if they have a disability related employee, resource, resource group, that's an automatic group that that you can align yourself with.

29:40

I have two questions of questions for you based on what you've been telling me right now. One is, when does voluntary work become paid work? And the second question is this, of all the types of disabilities that you have in case. Encountered, which is the one that is most difficult for persons to engage with?

30:09

Oh, that's a really interesting question.

30:14

Voluntary and paid work,

30:19

there's a there's a

30:21

there's a danger here in that oftentimes people with disabilities are expected to work for free, particularly around research, or asked to participate in research studies and focus groups and share our knowledge and our lived experience. Yeah, sometimes that's to help a company develop a product that they're going to sell and make a profit from. So our labor is being appropriated, and sometimes it's very challenging. It's it can be emotional labor to talk about your disability. And so I would say, if it's a if it's a research situation, for a corporate entity or a government entity, then people with disabilities should be paid, and they should, we should ask for that, and ethically, we should receive that. I think, voluntary work should be seen as I would hope that most people in our society do something voluntarily, whether it's formal or not helping, helping a neighbor, helping a family member, if you want to do it more formally within an organization, I think it should be treated. I think people with disabilities should treat volunteer work the same way anyone else does. It's something you do for the community, for the good of the order. The fact of the matter is, however, that if you are a job seeker, if you're trying to start a career, if you're trying to develop a resume, that volunteer work can be helpful, from a practical standpoint, to give you connections, help you build skills, etc. So I don't know, I don't know if there's a point at which volunteer work becomes paid work. I would hope that if a person wants paid work, they can achieve that. Volunteering could be a step toward toward achieving that, as far as far as disabilities for people to engage with, I'd say mental health. And again, that's not based on anything that's not based on any research I've done, or anything peer reviewed research I've read. I think that's just through my lived experience of being involved in a lot of disability organization. There's a great fear of blindness. Yes, there was a study some years ago, Johns Hopkins, Johns, Hopkins and Baltimore did it that people would rather loot, have a limb amputated or be diagnosed with cancer than we become blind. So there's a great fear, and it's, you know, it's primordial, it's many societies. It's considered, you know, a curse for some sort of wrong, wrong, right? So there's a lot of stuff there, but I I think in our western societies, I think mental health disabilities are the most challenging for people to engage with.

33:36

But you know, what would you how would you analyze this circumstance whereby the person is approached to do some or participate in a research project, and when the person says to the researcher, well, how much will you be paying me for my experience, my Knowledge, my skills, and you know, everything else on my expertise, and they say, well, we don't have the budget to pay. Would you advise a person then to say, Well, I'm sorry, but I need to be paid. Or would you advise a person then to continue on with the researcher?

34:19

Well, I think that's a judgment call based on the type of research and the organization that's doing the research. When I was doing my PhD research, I certainly did not have the capacity to pay my participants. However, the conversation was around the fact that I was doing research that would be valuable to help change the landscape of employment for people who are blind, it would be data that would be publicly available, that it could be it would add, add to the body of research that would help, help change, change the landscape for for employment, and in at least some small way you. So people are happy and eager to do that. If,

35:10

if someone is going to either

35:15

in real terms or in potential terms, earn money Yes from the research they're doing? Yes, then there should be some form of compensation.

35:26

I would say that's a conversation.

35:32

There are standards for corporate research that say participants need to be paid if it's a if it's a startup entrepreneur who doesn't have any cash, how about, how about 100 shares of stock in your company make it big someday?

35:49

Yeah,

35:50

we'll all be happy. But I

35:53

I think it's follow the money. If someone's going to profit directly from what they're gaining from you, then I think there should be a pretty clear conversation that it's, it's ethically important that there be compensation given to the research participant, if it's for if it's for scholarship, yeah, I think that's a different story.

36:17

Because I think for me as an entrepreneur, I often run into these circumstances whereby, you know, well, we don't have the budget, and I'm saying, Well, I'm happy to help you if it benefits others, but I also got to earn my living as well. Most of the time they just walked away. But anyway,

36:38

doctor, well, they Well, they missed out valuable wisdom and lived experience.

36:43

Dr Kirk,

36:46

what would you say was one of their most memorable advocacy experiences? And how did you overcome it?

36:59

I can tell you one that I didn't overcome, and that was when I was in high school in a small, small town, Snohomish Washington, our north of Seattle. And there were probably 30 of us kids who were kind of the college bound kids. So right senior year went into math, analysis, first period, then the physics second period, and then walked into chemistry third period, and the chemistry teacher said, no, no, you cannot take chemistry. That's a safety issue. You need to go to the office ask for a different class. Oh, no, I was quite upset. I went home and told my parents, whom I said earlier, were both teachers, and they said, Well, if Mr. So and So says can't take chemistry, then that's that's that. So no, I was assigned a study hall, and I just sat, I say I read trashy novels third period my senior year in high school. But now I've, I I've met blind people who teach chemistry in universities. I've met blind people with PhDs in chemistry who are entrepreneurs. So I know that that was not accurate information I was given, but I did not have self advocacy skills as a 17 year old, I did not know how to advocate. I did not know. Today I'd say, Well, that was, that was before there was IEPs, you know, individual education plans. So now it's families need, need to use those tools and get everything in that IEP that they want their student to have. And you know, if they need, if they need to bring in 20 people into that meeting to advocate, that's what they need to do. We weren't connected with any blindness organizations, right? You know now I'd say call, call your local chapter of the council the blind, or the Federation of the Blind. So I'd say those that was an experience where I did not have the tools I needed to deal with that situation. I deeply regret it, but that was just the fact of the matter. I didn't have the tools or the networks or the connections to do anything about that, as far as a success, I would say, when I was the CEO of the Lighthouse for the Blind here in Seattle, which is a social enterprise employing blind and deaf, blind people and businesses, including aerospace manufacturing, and has had a contract since the 1950s making parts for all the Boeing airplanes to engage at a state public policy level, when the Boeing Company was starting to outsource manufacturing to other states and the state of Washington was.

40:02

Was putting together a strategy to

40:07

build and maintain and grow the aerospace manufacturing base here in the state that I intentionally joined two boards of directors, one for the Association of Washington business and one for the aerospace futures Alliance and the state created an apprenticeship program called the aerospace Joint Apprenticeship committee program, which was designed to bring people into The aerospace industry through apprenticeships and becoming Certified Journeyman apprentices. And I advocated from the very beginning for inclusion of people who are blind in the program. And it was set up through partnership with the community college, Green River Community College, where the academic portion of the apprenticeship would happen, and we work with them to make sure all the curriculum materials were accessible. There's a practicum, hands on machining portion, which we arranged to have done at the lighthouse where we had the adapted computer numerically controlled milling machines adapted with jaws and screen magnification and voiced so that the blind people could do everything at the same level as the sighted people. And while I was still at the lighthouse before I was hired to go to the American Foundation for the Blind in 2016 I attended the first AJAC aerospace Joint Apprenticeship committee apprenticeship graduation at the Museum of Flight, four of the first 25 graduates statewide, where people were blind, and I recently received the newsletter from the Lighthouse for the Blind, and they were celebrating the 20th blind person who'd gone through the four year program and become a Certified Journeyman aerospace machinist, which is a beautiful, solid career. Wow, and so that, I think I would say is, is one of my proudest accomplishments, because very strategic, and it was very intentional, and it worked. It's still working, so that that's a beautiful thing. I'm no longer involved. I'm not involved in any way, but it still continues and

42:34

still benefiting people or blind

42:37

now, do you think that, or how can we better prepare those are our kids who are and I say kids loosely here. How do we prepare those getting ready to leave high school, and those who have left high school and now looking for a job? How do we prepare them to become more effective and powerful advocates.

43:07

Again, no, no simple solution. I think it's multi pronged. I think a lot of the things I've said before, I could kind of summarize in this context. One, one is join something. Yeah, your age older. If you have a notion of a career, find a blind person who's doing it. 95% of the jobs you could think of, there's some blind or visually impaired person doing it. There's blind auto mechanics and restaurant owners and novelists, attorneys, which woodworkers, you name it, and then ask, ask for informational interviews. I'm a huge proponent of that. If you're a young, blind or visually impaired person, and through internet search, you find a blind adult who's successfully doing what you're interested in. You call them or email them or DM them, yeah, and let them know you'd like to talk to them. They are 99.9% are going to be thrilled to hear from you and excited to talk, to talk with you, so that those are two things, join, join something that you're interested in. Find people are doing what you're interested in. And then a lot of it is hard work. It's skills and you need to be able to travel independently, yes, using a long way cane or a guide dog or whatever, whatever, whatever method you're going to use. And you need to be able to use assistive technology, because you need to be able to work on computers. 90% of the jobs are going to require you to do that. So. You need to be able to use screen readers or magnification, what, whatever.

45:07

And then,

45:10

you know, I don't think you necessarily, you know, some some occupations still need a four year degree fewer and fewer. So I think understanding where you can get education and training and certifications that are in your area of interest. And

45:27

I think that's probably the final key is, is

45:31

determine what really is interesting to you,

45:37

whether as a hobby, as something fun, as a potential career. And let let that interest, rather than some survey of where the jobs are, but let your own personal interest kind of drive you to explore, to start connecting with people many any profession you can think of as a professional association, you can sign up for their newsletter and their websites. You can look at, if you live in a large city, there's going to be meetings and conferences so but follow. Follow. Follow your interest and your curiosity.

46:17

Now you mentioned that you've always spoken about having more participation of persons with disabilities or those who are blind and vision impaired in the workforce. What are some of the strategies you think that can be used by us? And I know you've touched on these before. And also, my my second question to this, what do you think of you know, most people like to say, well, you know, I'd like to work in the mainstream workforce. What about the promotion of entrepreneurship as an alternative? What do you think of that?

46:53

I think, I think very highly of that. So I think the main point I want to make is I've hired a lot of people. I've interviewed many, many, many people and hired many people and decided not to hire many people. And I think we as people with disabilities need to present ourselves as problem solvers, not problem creators. To and to frame our lived experiences of disability as a creator of strengths. So we know through books like The Talent Code that the way people develop strengths is through overcoming challenges. So top athletes, top musicians, top chess champions, they all start out with simple basics and face increasingly difficult challenges until they became masters. And we as people with disabilities, face challenges every day and just have myriad opportunities to solve problems and be creative. So we we develop strengths around resilience and perseverance and creative problem solving and the ability to form and work in teams and communication skills, and those are the things employers want. So, so I think it's important to frame ourselves in terms of strengths. And I was talking to a group of high school age students, blind students here in Washington state, who were here in Seattle for a summer program. And there was one young man who was trying just to get that first job. And I said you're applying along with, you know, hundreds of other 18 year old kids for this job. But you are unique. You are probably the only one who has a blind kid, went through your high school, graduated, got whatever GPA you got. I said, I don't know what your experiences are, because we don't know each other that well, but Right, let's, let's say you know you took care of your younger brother and sister after school, while your while your parents worked, or you had a successful dog walking business, or you became famous for baking cookies for the bake sale, or whatever you've done something, something as a blind person, yeah, is really unique. Is going to set you apart from everyone else. So, you know, as a person with a disabilities, there's a point at which you if you have a visible disability, there's a point at which you choose to disclose that disability. And my first job seeking out of college with my I had a phi, beta, kappa, kumad, and all very successful academic record, and I would send. Out my cover letter and my resume, and I'd get a phone interview and go, great. They'd asked me to come in for the in person interview. I'd walk in with my long white cane, my Blasi stylus, my braille paper. Yeah, you know, they'd get very confused. Yeah, never met a blind person before. Yes, yes. How could this blind kid do this job applying for Right, right? So then I started disclosing in my cover letter. Then I wasn't getting the phone interviews, but I, I think to position the your lived experience of disability as a as a strength and as a uniqueness, and use it to distinguish yourself, especially if you're young, looking for that entry level job, everyone else is applying as a dime a dozen. Their resumes all look the same. They've all done the same thing. I graduated from high school. I got a 3.8 GPA on the track team. I was on the debate team. Yes, say you, man, what? Have you done as a blind person that is going to blow this person away? Now, one of the people I interviewed in my dissertation sent in an application to a job they really didn't think they had a shot for, and they attached a clipping about how they had done an Iron Man Triathlon as a blind person.

51:26

Whoever read that, called them and said,

51:29

I need, I need to meet you. I cannot believe that you did this Iron Man. I do Iron Man triathlons. I don't know how a blind person could do this. I need to come in. They ended up getting a great job so and then as far as to say disability and entrepreneurship or self employment, it's very similar in that the lived experience of disability allows us to develop the strengths that lead to success as entrepreneurs. And there's really a nice body of scholarship around that there are researchers. I've met people with disabilities who this is their field of study. How does disability lead to successful entrepreneurship? And it's the same thing. Develop a perseverance, and you don't you don't say no, and figure out creative ways to get things done. You know how to put a team together and how to communicate. Know how to analyze and manage risk. And so in the US, as I mentioned, only 35% of us are working people with significant disabilities as a point, as opposed to 70% of the general population, and of that 70% of the general population, about 12% are self employed. So I'll just say self employed as a standard for for entrepreneurship, and of the 35% of us who are employed, only 6% of those are self employed. And more than half of us work for the government or for nonprofits. So I just think there's a great field of opportunity for blind people with disabilities to be business owners, to be entrepreneurs. So you would give a thumbs up to entrepreneurs, yeah. And you know, it's all Donna. It's all about the fit between. So we have impairments, right? Yeah. So I'm blind. I have a visual impairment that my eyes do not have sight. Yeah, if I am, if I'm in certain situations I am not, I'm not disabled at all. Example I use is I'm running a meeting, board meeting. I have my frail agenda. I've got my financial reports, I got everything I need, and Braille I can run the meeting just like anyone else. If I walk in and there's no braille, and you hand me a stack of print, then I'm in a disabling situation. Visual Impairment won't allow me to interact effectively with the environment, the environment being that stack of print. So we operate in these environments, the built environment, the digital environment, the social environment. So to be successful in career, there has to be a decent fit between us, our impairment, and these environments. But if you're self employed, you get to create the fit people with disabilities, so you know people have chronic illness, maybe they can only work three hours at a time. Take a two hour break. If you own your own business, you can design it that way. If

54:35

you know you need a an assistant

54:39

to do such you don't have to go through processes to get approvals. You get what you get what you need. So there's just so much more flexibility to customize the fit between yourself and your work. And I've discovered that now that I've had this consulting practice for a little over two years, I worked for. I worked in banking and finance, which was corporate for 10 years, and I was the only person within those organizations that I knew of. And then I worked for nonprofits that focus on blindness, so those organizations were very predisposed to providing accommodations and supports, and still, I ran into some challenges. But now that I have my own business, I have a great sense of freedom of how I use my time, how I decide what to work on and what not to work on, who I decide to do projects with who I decide not to so I think it's, I think it can be a beautiful

55:50

thing. How can we promote entrepreneurship as a strong alternative to workplace? Employment? Me, I as an entrepreneur, have been since year 2000 I am for entrepreneurship, and I agree with a lot of what you said. How can we go about promoting entrepreneurship to our community?

56:16

Well, one thing I have come to believe is, rather than creating anything new that's disability specific, a more effective strategy is to find programs that are already working and work with them to become more inclusive of people with disabilities. So there's quite a few programs, apprenticeship programs, business development programs that have special folks focus on bringing in underrepresented populations. They usually have started with race and gender or geographic location. People live in rural areas, people live in urban areas, whatever it happens. But there are successful, proven programs out there, entrepreneurship centers, entrepreneurship programs here in the US, the Small Business Administration, apprenticeship programs. And my strategy is to find those winners that are already doing great work, that have proven track records, that have not as most of them, have not put time, effort, resource, into being disability inclusive, and have those conversations. If you have this great program, it's a wonderful track record. Can we have a conversation about how I can help you be inclusive of people who are blind in your program as a for instance. So I both, I mean, they the internet search engine is a beautiful thing. So I would, if you're interested in entrepreneurship, I would find an entrepreneurship program

57:57

that either is in your area,

58:00

physically, or serve you virtually, and I would, I would connect with the programs that are already out there. Say, Hey, I just read about your organization. Super excited. I want, want to explore getting involved. I am blind, I use screen reading software, or I'm a wheelchair user, or deaf, I use sign language interpreters, or whatever it happens to be. And let's have, let's have a conversation about how I can

58:37

take part in your training, be part of your program.

58:41

Great. I know we're running out of time, but I have to ask this question before I let you go and this is it's this, what are some of the more pivotal moments that you could think of while you were working for the lighthouse in Seattle that has helped to influence influence your leadership? I Oh,

59:02

I would say the transformational power of employment.

59:11

Young Lady

59:14

I'll call, I'll call her Sue, even though that's not her name,

59:18

blind,

59:22

developmental disability,

59:25

living at home,

59:28

not expected to do anything after high school, her parents expected her to live with them The rest of her life. Yeah, they went to a local chapter meeting of an American Council, the blind chapter. There were some people there who worked at the lighthouse. They talked to her and her parents and said, you know, there's a there's a job for her. She she can come and earn a living, and now she's living in an apartment.

1:00:07

She takes the ferry across the

1:00:10

Seattle every day, gets on a bus, comes to work in the lunchroom at lunch with her, with her friends,

1:00:19

living, living a life.

1:00:24

So many examples like that, a gentleman who was blinded through gun violence, early 20s, criminal, criminal situation, incarcerated, again. Just thought, you know, would never be able to amount to anything in life, aerospace machinists, married kids, house so no, not just the financial rewards of work, but just the dignity of work. This the identification that comes with that in our society, there's such a strong, positive self identification that comes with with being employed or earning your own way, being contributing person. So just, just those firsthand and I, you know, whenever I thought I was having a difficult, challenging day with whatever budgets or board meetings or whatever, I would just go to the lunchroom when people were taking a break from work out on the machine shop floor or the manufacturing floor, and just sit with people. I'd say that's that's the main thing.

1:01:40

Dr Curtis, any final thoughts for me, as you know, overall, what thoughts would you share with regard to, how can one remain positive? What can they do to to, you know, be a part of society and not become one who thinks, Well, I'm just a drag on society. I am just a gift, not a gift, but a token of society. What? What are your final thoughts? What sort of advice would you share with others? Uh,

1:02:17

join. Join something. Some people love to be parts of big organization. Some people like to just have a couple friends, but don't, don't, unless you're a hermit, you're interdependent on other people. Anyway, yeah, we all depend on one another. We all provide different things for each other. So make, make, make connections.

1:02:44

And if your thing is playing

1:02:47

role playing games, find some other blind people play role playing games. Your thing is coin collecting, people who do point collecting, if your thing is animals, find some people who also are passionate about welfare of animals, so it doesn't have to be formal, it doesn't have to be big. It could be your neighborhood. It could be your church or your synagogue or your place of worship or the local clean up the park day or whatever, whatever can motivate you to connect.

1:03:26

Dr Cook, it was a pleasure and a privilege interviewing you over the last hour. I really appreciate it. I want to thank Aaron for having brought us together.

1:03:35

Yeah, all the time flew by. Yeah, that's when you know you're having a good time.

1:03:38

I did have a good time. Yeah, I had a lot of fun. And if you ever wanted an interview from me again, I would be more than happy to interview

1:03:47

you again, and I'd like to interview you. Oh, yes,

1:03:51

anytime, we'll get Aaron to set this up. Thank you so much, sir. I appreciate it

1:03:56

nice to meet you.

1:03:57

You too. You take care, right? Have a wonderful week. You too. Now, thank you. Bye, bye, bye.

1:04:06

Donna wants to hear from you and invites you to write to her. At Donna jarred hand@gmail.com

1:04:13

Until next time you.

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In this episode of Remarkable World Commentary Donna interviews Dr. Kirk Adams, a leading blind advocate, speaker, researcher and consultant, about his journey and insights on advocacy and employment for people with disabilities. Dr. Adams shares his early experiences of losing his vision due to retinal detachment and the impact of high expectations and specialized skills on his success. He emphasizes the importance of community, leadership, and self-advocacy. Dr. Adams discusses his PhD research on successfully employed blind adults, highlighting themes like compensation, internal locus of control, and the need for accommodations. He advocates for joining organizations, volunteering, and leveraging unique experiences to succeed, either in the workforce, or in entrepreneurship.

RWC Episode 13 Transcript

SUMMARY KEYWORDS

blindness skills, high expectations, internal locus, parental influence, spatial relationships, PhD insights, employment challenges, leadership development, community involvement, volunteer work, entrepreneurship, disability strengths, self-advocacy, accessible technology, transformational employment

00:00

Music.

00:12

Greetings, Donna J Jodhan, LLB, ACSP and MBA invites you to listen to her bi weekly podcast. Remarkable world commentary. Here, Donna shares some of her innermost thoughts, insights, perspectives and more with her listeners. Donna focuses on topics that directly affect the future of kids, especially kids with disabilities. Donna is a blind advocate, author, sight loss coach, dinner mystery producer, writer, entrepreneur, law graduate and podcast commentator. She has decades of lived experiences, knowledge skills and expertise in access technology and information as someone who has been internationally recognized for her work and roles. She just wants to make things better than possible.

01:06

Dr Kerr, it's an honor and a pleasure for me to be interviewing you. I've heard a lot about you as you know, I live in Canada. I'm a Canadian advocate, but, you know, we get a lot of news from the United States on advocacy and everything else, and I am just so delighted to be interviewing you. So are you ready?

01:28

It's a pleasure. Yes, I'm very ready.

01:32

So, Dr Adams, you lost your vision at a very early age. How has this helped to shape your approach to education and advocacy.

01:46

Yes, My situation is somewhat unique, and I was born sighted, and had full vision until I was five years old, and I was in kindergarten, in public school, and my retinas both detached due to hemorrhaging of some blood vessels in my eyes, the pressure detached the retinas, and it wasn't wasn't detected until detachment was happening. So I had an emergency retinal surgery, and then a series after that, but I essentially became totally blind within just a couple of days. So it was a very, very rapid transformation, and that resulted in a couple of things. First, my my parents were told they were young. They were in their mid 20s. They were told that I could not come back to the neighborhood school, that Blind Children and Deaf children needed to go to the state residential school. And we live north of Seattle, and my parents visited the Washington State School for the Blind in Vancouver, Washington, and were not pleased with what they saw there. As far as academic activity, they were both teachers and I had my retinal I was referred to a retinal specialist in Portland, Oregon. Someone there said that Oregon State School for the Blind was great, and they visited, took me, and I remember visiting, and they thought it was great, and I thought it was great. So they moved, quit their jobs, and moved the family. So I went to school for blind children for first, second and third grade, and I got three things there that later on in life, as a researcher, I discovered our strong predictors of successful employment and thriving as a blind adult, right? And one of them was the acquisition of blindness skills, and I was totally blind, so there was no question, did I need to learn braille? Did I learn need to learn how to travel safely and independently and confidently with a long way cane, right? Did I need to learn? They call it keyboarding now, but it was typing then. Did I need to learn how to type on a typewriter so that I could go to public school and succeed in public school so I got my blindness skills down, rock solid as a 678, year old. And you know, I know now through research on my own research on for my dissertation, that you know the specialized skills related to disability are essential for for thriving as an adult with a disability. So no matter where a person that is that in their journey, you know, the stronger their their specialized skills can be, the better. And that that is exemplified in a concept called the expanded core curriculum, which the expand American Foundation for the Blind and Dr Phil Han developed so many years ago. So, but it basically said a blind kid needs to learn everything the sighted kids need to learn, plus nine other things, which is assistive technology, orientation, mobility, self advocacy, Braille, etc. So that was the one thing, the blindness skills, then the other. The other thing was high expectations, and that the school held high expectations for all the students. I was there with 120 other blind kids were expected to be performing at grade level. My parents were teachers. My dad was a high school basketball coach. They had high expectations of myself and my younger brother and sister, and so we see that not every blind kid is born into that situation where people hold high expectations of them, and that can lead to many problems that, including internalizing those, those low expectations, over protectiveness, those, those types of things. So I got I got my blindness skills, I got my high expectations. And then the third thing was a strong internal locus of control. And that means that you feel just deep in your deep in your bones, you know that you can overcome obstacles. You can forge your own path. You can accomplish what you want to accomplish. And that's opposed to a an external locus of control, where you where you believe things are happening to you, and there's not much you can do about it. And so I was, I was given those three things, and you asked, not so super long winded way to answer your question. But as far as informing advocacy, it's like understanding that that not everybody was given those things, that so people, some people are different parts of the blindness journey. Some people haven't had opportunities to acquire those skills. Some people have lived with low expectations of them offered to them. Some people haven't had those opportunities to develop that strong internal locus of control. And how and how do we ameliorate that? How do we dismantle that?

07:25

Would you say that that your parents, like, you know, because of having such great parents, that was a very large influence, I played a large influence on how you structured yourself, and how you structured your abilities, capabilities, you know, in moving forward and seeing the world in a different light, in that, you know, we are not all fortunate to have great parents to influence, right? I had great parents, and I am here today because of them. Would you see that, that having had terrific parents helped you out,

08:02

then I'll, I'll say terrific with a with a caveat. So they, they were terrific in some ways, in that at they had those high expectations of me. They expected nothing less than a on a report card. They expected me to do family chores. They expected my dad was a coach, expected me to be involved in athletics and expected me to be involved in extracurricular activities. They did not provide a lot of psychosocial support or kind of empathy around how challenging it could be. I grew up in small towns in the Pacific Northwest, I was always the only only blind kid in my school. The teen years were particularly rough, as you know, in my towns where I lived, when kids turned 16, they got driver's licenses,

08:55

they usually got some sort of a job.

09:00

So those, those things were challenging. I was pretty, pretty isolated. I would say pretty I'd say in a grief, grief cycle. When I was 6789, 10 years old, I think everything was pretty okay. I experienced her, you know, I was experienced some bullying middle middle school. We were not connected with any blindness organizations. I did not know any other blind people. No, I didn't have any blind adult role models. My parents had never met a blind person before. My retinas detached. They knew me, right, but I would say terrific. On some fronts, they did the best they can. They did the best they could. On some of the other aspects, i. I would hope that a blind child today, if they were fortunate enough to to be born into a family with the resources and structure, would use things like the internet and do research and, you know, connect with other blind people and find some some community, which I certainly did.

10:21

So it sounds as if you had to summon your own inner strengths to deal with the expectations of your parents, and somehow you managed to navigate rough seas and to be able to be where you are today. Would you agree with that statement?

10:39

Yeah, I'd say so

10:43

couple things that came to mind. I think reading. I just was an avid reader. I was hospitalized a lot. I had a number of eye surgeries between age five and 12, and I would, this is before laser surgery. So they they'd actually go in there and do things, and then I'd have to lay a mobile one of bed for 10 days. And so I became just an avid reader. So I just read and read and read. And that just opened up a world for me, and gave me, gave me some of those role models, you know, on the pages. So I think reading was super important. And then I think as young kids often, do you know, adopting kind of heroes. My My family was really into sports. So sports heroes like Wilmore Rudolph, who had disabilities related to being in a childhood house fire, you know, became world champion track athlete.

11:56

People like that come to mind.

11:58

So it sounds as if like, despite, you know, the high expectations from your parents, you developed your own strategies to deal with, you know, like being the only blind person in your neighborhood or at school or whatever, you developed your own strategies to deal with all of this. Right? Would you say yes? I'd

12:19

say some consciously, some unconsciously, yeah,

12:25

I'd say just associate,

12:29

which hasn't, hasn't, always served me well as an adult. You know, the ability to kind of shut off the emotions, kind of while you're, you know, while all myself off from some of the more distressful things.

12:43

It's not an easy world to navigate, sir. It's very difficult when you know you're on your own. You have parents who are really expecting you to do well. You want to do well, but you know, there are things that we all have to deal with in many ways, right?

13:02

Yeah, yep, and the indomitable human spirit.

13:07

And again, I think being a kid,

13:10

I think it's a whole different ball game. If you've lived into your adulthood as a sighted person, then you become a blind person. I, I, I know, just from speaking with people, what a different experience that is from what I have, because children are so adaptable,

13:28

curious. Do you remember anything about the sighted world? I know you lost your sight at age five years old, but do you remember anything at all that could have helped you? You know, could have been a reference for you to build on, I

13:44

think probably, probably some spatial relationships. I don't remember colors if you if you say red or blue, I see in my mind the braille characters for red and blue. I don't I think mountains trees, like, I say my dad was a basketball coach. I was like, in high school gymnasiums, which kind of big open spaces, parks. We were pretty outdoors family, so out in boats on the water and on the beach and things like that. So I haven't dug into it formally or scientifically, but I but I think some of those concepts of spatial relationships that are are internalized have been helpful to me, especially around orientation and mobility. I have pretty good on animals, as far as being plunked down at a in a hotel or a conference center or an airport or somewhere, and, you know, not, not, not taking terribly long time to get oriented to the space and being able to navigate through structured discovery. And I, I think some of those spatial relationships that. Are deep, buried deep down there the subconscious somewhere have been helpful, because

15:05

I've been told that I was born with little or no vision and then got a whole whack of it when I was a teenager. But I've been told that sometimes those who are born with vision and then they lose it. It's a difference between them and someone who was born with little or none. Would you agree with that?

15:25

Again, not scientifically based, but just from talking with people and observing people. I'd say so, okay, all right,

15:33

how has your PhD in leadership and change influenced your approach to advocacy and organizational management.

15:47

My dissertation work. My dissertation is called journeys through rough country, an ethnographic study of blind adults successfully employed in American corporations. So I interviewed blind people who self described as successfully employed at name brand companies that you would all know, Microsoft, Amazon, Apple, Google, Facebook, Chase, Bank, AT and T, etc, etc. And I just gained so many insights from people reading the literature reviewed in order to situate my research in the in scholarship. I read every article published about blind deployment over the past 20 years, so I got a very deep grounding in in the research and the realities. And it's a very complex fact that in the US, only 35% of us are in the workforce, as opposed to 70% of the general population. And that number hasn't changed much. No, it's a complex set of problems which don't, don't lead to easy, easy solutions. But I, I read the academic studies and the research and the data, and then I talked to the people, and I confirmed a lot of what I read, but, but gave me some some new insights. And, you know, there were nine themes that came out of it, but the first and foremost was when asked, you know, your your describe yourself as successfully employed. You know, what do you base that on? And everyone, in some form or fashion said, their compensation, their salary, what, what they were earning? Okay, all of them had that strong internal locus of control that I talked about, that I got at the School for the Blind in Oregon, but many of them attributed that to an experience or series of experiences, mostly in the teen years or or childhood into the teen, maybe early 20s. A lot of it had to do with something physical, outdoors. One person who'd been a senior executive at a telecom company for 40 plus years. Her story was that she and her 10 year old, when she she and her twin sister was cider were 10 or their parents sent them to a sleepaway camp, and when it came to the horseback riding, you know, the counselors told the blind girl, no, no, you can't do the horse riding. That's too dangerous, you know you're gonna have to sit here. Yes, and that night, she and her sister got stuck out of the cabin and got a couple horses out, went riding, and she just remembered the exhilaration, the freedom of being with her sister and the night riding the horses. And another person was a young, 1213, year old boy living in New York City and the neighborhood, boys would all ride their bikes and do these bicycle tricks, you know, jump off the curb and ride the bike and stand up on the seat. Yeah. So he, you know, he did that, ended up in the emergency room more than once. Oh, my goodness. I often, I often, tell parents of blind kids, you can gage what a good, how good of a job you're doing as a parent of a blind child by how many times you need to go to the ER, but another person who was denying her blindness and not using a cane and how to had a bad fall. One wandered into a construction site and fell down some stairs and got pretty badly injured, and she ended up going to a blindness rehabilitation center where they took her rock climbing and snow skiing. So everyone had. Something that gave them that sense that they could overcome and could be creative and could forge their own, their own path. And then, you know, everyone talked about the need to have knowledge, skills and abilities. You had to compete with everyone else in the workplace, and kind of like that Hispanic core curriculum, you also needed to be better, smarter, faster than everyone else, and then everyone expressed disappointment, and that was the theme that didn't come out in the research studies that I read, because they were really data based. And there's not a lot of graphic research out there, but everyone expressed disappointment that people who were less senior than them, had less knowledge, skills and abilities, were promoted beyond them, that there was no one above them on the org chart with a visible disability, that they were the only person in their organization with a disability who got that far, that they had to keep fighting for accommodations all the time, that more than once people talked about they came in one day and the company had changed some system, and they hadn't taken accessibility to an account into account, so all of a sudden they couldn't do their job. And you know, they have to keep fighting over and over again for accommodations and accessibility. So so everyone had had that disappointment. So I would say the way my Ph D has helped me as a couple of things. It's the PhD in leadership change. So I studied leadership, and I read a lot about leadership and understanding the various forms leadership can take and how important leadership is. If anything truly transformational is going to happen, we need leadership, and that has led me to really be passionate about developing, helping develop, supporting the development of blind people as leaders. And then I think the other thing was just the grounding and the reality of people's situation. You can read these articles and these data sets and these studies and these comparisons of of data, but then when you really talk to people and hear about their lived experience, it just really establishes a deep establish for me, deep, and again, deep in my bones that these problems are really challenging, really complex, really difficult, and it's going to take a lot of persistence. It's going to take a lot of collective action. It's going to take a lot of alignment

23:03

and

23:05

an understanding that in order for us to make anything really significant happen, to change some of these numbers, we're going to have to get government, corporate, nonprofit and the community and individuals aligned

23:26

and rowing in the same direction.

23:29

So would you say that

23:33

there is a glass ceiling that we have to crack, that we have to forge through these, this, this so called Glass Ceiling. I you know, my personal opinion is that they do exist. But how do we do that? And I think you just said it, it's getting everybody to grow in the same direction. How can we do this? How could we influence government? Is it like strength lies in numbers. More legislation like I know in Canada we are still fighting because, yeah, you know, we, we enacted the accessible Canada Act in 2019 but I don't think much has changed here in my country. What would be your advice then to, you know, the younger folk coming up, you tell them, you know, there is a glass ceiling that we have to crack and break. What can we do?

24:30

Well, I think glass might be a little weak of a metaphor. I think it's stronger than glass. Yes. I mean, if you look at boardrooms and C suites, you know, you see some women, you see some people of color. You really don't see many people with disabilities. I was talking to a gentleman here is a wheelchair. You. Or he's the head of a organization called Arts Fund here in Washington State, and they fund about 700 arts organizations, and they did a democratic traffic survey of the 700 organizations that they funded, but less than 3% of their senior staff or board members were people with disclosed disabilities. So if you if you look at demographics, you would say about 15% of the working age population in the US have disabilities. And then when companies report out on the numbers of people with disabilities they employ, it's always one and a half to 4% so there's a lot of people with disabilities out there who aren't disclosing. Disabilities that aren't

25:49

they are free to disclose. Yes,

25:51

yes, yes, yeah. So you know, 70% of disabilities are not visible. So you know, ADHD and anxiety and depression, neurodiversity and all those things. So I I think again, no simple answer, Donna, but I think it's based in community, and we have so many wonderful tools now, with the Internet search engines, to find and develop community. So to find those leaders who have influence, have a career, have social capital, who have a disability, to encourage and create environments where people can disclose disabilities, to find other people who share some things in common with you around your disability experience, if you're a parent with a disabled child, to find other families have children with a similar disability, especially some that may have trodden the path before you a little bit, have learned some things they can share. So so I think it's again about aligning those things, the government, the corporate, the nonprofit in the community, but I think it's really, really hard to do that at a macro level all at once. I think as individuals, our our best strategy is to be involved and do that through a community framework. So join something, but attend things, committees, meetings, volunteer to be in leadership positions for young people. I tell them, you know volunteer, because the research shows that volunteer work is just as strong a predictor as paid work as a young person for future employment success. So you know, there's a there's an association, a society, a group for any interest, whether it's virtual or a person or a hybrid that you can find on the internet. So I say, join something and Volunteer. Volunteer one, one definition of a leader, I like, is anyone who's willing to help right now. So well, volunteer for that, that committee, lead, lead something start out small, if, if you need to develop those skills. But I guess that's a bit of a halting answer, because there's, there's no easy answer. But I think find those allies, find those elected officials who have a disabled child or disabled brother here in the United States, the senator from Iowa, Tom Harkin, who's retired now, was a great disability advocate leader and really drove a lot of legislation. He had a brother whom we dearly loved who was severely disabled. As an example,

29:07

find those people within companies

29:13

who have a disability. Talk about it. Think about going if you're if you're looking for a place to work. You know, I tell people, look, look at the company. See if they include disability in their statements around diversity, equity, inclusion, if they're big enough, find out if they have a disability related employee, resource, resource group, that's an automatic group that that you can align yourself with.

29:40

I have two questions of questions for you based on what you've been telling me right now. One is, when does voluntary work become paid work? And the second question is this, of all the types of disabilities that you have in case. Encountered, which is the one that is most difficult for persons to engage with?

30:09

Oh, that's a really interesting question.

30:14

Voluntary and paid work,

30:19

there's a there's a

30:21

there's a danger here in that oftentimes people with disabilities are expected to work for free, particularly around research, or asked to participate in research studies and focus groups and share our knowledge and our lived experience. Yeah, sometimes that's to help a company develop a product that they're going to sell and make a profit from. So our labor is being appropriated, and sometimes it's very challenging. It's it can be emotional labor to talk about your disability. And so I would say, if it's a if it's a research situation, for a corporate entity or a government entity, then people with disabilities should be paid, and they should, we should ask for that, and ethically, we should receive that. I think, voluntary work should be seen as I would hope that most people in our society do something voluntarily, whether it's formal or not helping, helping a neighbor, helping a family member, if you want to do it more formally within an organization, I think it should be treated. I think people with disabilities should treat volunteer work the same way anyone else does. It's something you do for the community, for the good of the order. The fact of the matter is, however, that if you are a job seeker, if you're trying to start a career, if you're trying to develop a resume, that volunteer work can be helpful, from a practical standpoint, to give you connections, help you build skills, etc. So I don't know, I don't know if there's a point at which volunteer work becomes paid work. I would hope that if a person wants paid work, they can achieve that. Volunteering could be a step toward toward achieving that, as far as far as disabilities for people to engage with, I'd say mental health. And again, that's not based on anything that's not based on any research I've done, or anything peer reviewed research I've read. I think that's just through my lived experience of being involved in a lot of disability organization. There's a great fear of blindness. Yes, there was a study some years ago, Johns Hopkins, Johns, Hopkins and Baltimore did it that people would rather loot, have a limb amputated or be diagnosed with cancer than we become blind. So there's a great fear, and it's, you know, it's primordial, it's many societies. It's considered, you know, a curse for some sort of wrong, wrong, right? So there's a lot of stuff there, but I I think in our western societies, I think mental health disabilities are the most challenging for people to engage with.

33:36

But you know, what would you how would you analyze this circumstance whereby the person is approached to do some or participate in a research project, and when the person says to the researcher, well, how much will you be paying me for my experience, my Knowledge, my skills, and you know, everything else on my expertise, and they say, well, we don't have the budget to pay. Would you advise a person then to say, Well, I'm sorry, but I need to be paid. Or would you advise a person then to continue on with the researcher?

34:19

Well, I think that's a judgment call based on the type of research and the organization that's doing the research. When I was doing my PhD research, I certainly did not have the capacity to pay my participants. However, the conversation was around the fact that I was doing research that would be valuable to help change the landscape of employment for people who are blind, it would be data that would be publicly available, that it could be it would add, add to the body of research that would help, help change, change the landscape for for employment, and in at least some small way you. So people are happy and eager to do that. If,

35:10

if someone is going to either

35:15

in real terms or in potential terms, earn money Yes from the research they're doing? Yes, then there should be some form of compensation.

35:26

I would say that's a conversation.

35:32

There are standards for corporate research that say participants need to be paid if it's a if it's a startup entrepreneur who doesn't have any cash, how about, how about 100 shares of stock in your company make it big someday?

35:49

Yeah,

35:50

we'll all be happy. But I

35:53

I think it's follow the money. If someone's going to profit directly from what they're gaining from you, then I think there should be a pretty clear conversation that it's, it's ethically important that there be compensation given to the research participant, if it's for if it's for scholarship, yeah, I think that's a different story.

36:17

Because I think for me as an entrepreneur, I often run into these circumstances whereby, you know, well, we don't have the budget, and I'm saying, Well, I'm happy to help you if it benefits others, but I also got to earn my living as well. Most of the time they just walked away. But anyway,

36:38

doctor, well, they Well, they missed out valuable wisdom and lived experience.

36:43

Dr Kirk,

36:46

what would you say was one of their most memorable advocacy experiences? And how did you overcome it?

36:59

I can tell you one that I didn't overcome, and that was when I was in high school in a small, small town, Snohomish Washington, our north of Seattle. And there were probably 30 of us kids who were kind of the college bound kids. So right senior year went into math, analysis, first period, then the physics second period, and then walked into chemistry third period, and the chemistry teacher said, no, no, you cannot take chemistry. That's a safety issue. You need to go to the office ask for a different class. Oh, no, I was quite upset. I went home and told my parents, whom I said earlier, were both teachers, and they said, Well, if Mr. So and So says can't take chemistry, then that's that's that. So no, I was assigned a study hall, and I just sat, I say I read trashy novels third period my senior year in high school. But now I've, I I've met blind people who teach chemistry in universities. I've met blind people with PhDs in chemistry who are entrepreneurs. So I know that that was not accurate information I was given, but I did not have self advocacy skills as a 17 year old, I did not know how to advocate. I did not know. Today I'd say, Well, that was, that was before there was IEPs, you know, individual education plans. So now it's families need, need to use those tools and get everything in that IEP that they want their student to have. And you know, if they need, if they need to bring in 20 people into that meeting to advocate, that's what they need to do. We weren't connected with any blindness organizations, right? You know now I'd say call, call your local chapter of the council the blind, or the Federation of the Blind. So I'd say those that was an experience where I did not have the tools I needed to deal with that situation. I deeply regret it, but that was just the fact of the matter. I didn't have the tools or the networks or the connections to do anything about that, as far as a success, I would say, when I was the CEO of the Lighthouse for the Blind here in Seattle, which is a social enterprise employing blind and deaf, blind people and businesses, including aerospace manufacturing, and has had a contract since the 1950s making parts for all the Boeing airplanes to engage at a state public policy level, when the Boeing Company was starting to outsource manufacturing to other states and the state of Washington was.

40:02

Was putting together a strategy to

40:07

build and maintain and grow the aerospace manufacturing base here in the state that I intentionally joined two boards of directors, one for the Association of Washington business and one for the aerospace futures Alliance and the state created an apprenticeship program called the aerospace Joint Apprenticeship committee program, which was designed to bring people into The aerospace industry through apprenticeships and becoming Certified Journeyman apprentices. And I advocated from the very beginning for inclusion of people who are blind in the program. And it was set up through partnership with the community college, Green River Community College, where the academic portion of the apprenticeship would happen, and we work with them to make sure all the curriculum materials were accessible. There's a practicum, hands on machining portion, which we arranged to have done at the lighthouse where we had the adapted computer numerically controlled milling machines adapted with jaws and screen magnification and voiced so that the blind people could do everything at the same level as the sighted people. And while I was still at the lighthouse before I was hired to go to the American Foundation for the Blind in 2016 I attended the first AJAC aerospace Joint Apprenticeship committee apprenticeship graduation at the Museum of Flight, four of the first 25 graduates statewide, where people were blind, and I recently received the newsletter from the Lighthouse for the Blind, and they were celebrating the 20th blind person who'd gone through the four year program and become a Certified Journeyman aerospace machinist, which is a beautiful, solid career. Wow, and so that, I think I would say is, is one of my proudest accomplishments, because very strategic, and it was very intentional, and it worked. It's still working, so that that's a beautiful thing. I'm no longer involved. I'm not involved in any way, but it still continues and

42:34

still benefiting people or blind

42:37

now, do you think that, or how can we better prepare those are our kids who are and I say kids loosely here. How do we prepare those getting ready to leave high school, and those who have left high school and now looking for a job? How do we prepare them to become more effective and powerful advocates.

43:07

Again, no, no simple solution. I think it's multi pronged. I think a lot of the things I've said before, I could kind of summarize in this context. One, one is join something. Yeah, your age older. If you have a notion of a career, find a blind person who's doing it. 95% of the jobs you could think of, there's some blind or visually impaired person doing it. There's blind auto mechanics and restaurant owners and novelists, attorneys, which woodworkers, you name it, and then ask, ask for informational interviews. I'm a huge proponent of that. If you're a young, blind or visually impaired person, and through internet search, you find a blind adult who's successfully doing what you're interested in. You call them or email them or DM them, yeah, and let them know you'd like to talk to them. They are 99.9% are going to be thrilled to hear from you and excited to talk, to talk with you, so that those are two things, join, join something that you're interested in. Find people are doing what you're interested in. And then a lot of it is hard work. It's skills and you need to be able to travel independently, yes, using a long way cane or a guide dog or whatever, whatever, whatever method you're going to use. And you need to be able to use assistive technology, because you need to be able to work on computers. 90% of the jobs are going to require you to do that. So. You need to be able to use screen readers or magnification, what, whatever.

45:07

And then,

45:10

you know, I don't think you necessarily, you know, some some occupations still need a four year degree fewer and fewer. So I think understanding where you can get education and training and certifications that are in your area of interest. And

45:27

I think that's probably the final key is, is

45:31

determine what really is interesting to you,

45:37

whether as a hobby, as something fun, as a potential career. And let let that interest, rather than some survey of where the jobs are, but let your own personal interest kind of drive you to explore, to start connecting with people many any profession you can think of as a professional association, you can sign up for their newsletter and their websites. You can look at, if you live in a large city, there's going to be meetings and conferences so but follow. Follow. Follow your interest and your curiosity.

46:17

Now you mentioned that you've always spoken about having more participation of persons with disabilities or those who are blind and vision impaired in the workforce. What are some of the strategies you think that can be used by us? And I know you've touched on these before. And also, my my second question to this, what do you think of you know, most people like to say, well, you know, I'd like to work in the mainstream workforce. What about the promotion of entrepreneurship as an alternative? What do you think of that?

46:53

I think, I think very highly of that. So I think the main point I want to make is I've hired a lot of people. I've interviewed many, many, many people and hired many people and decided not to hire many people. And I think we as people with disabilities need to present ourselves as problem solvers, not problem creators. To and to frame our lived experiences of disability as a creator of strengths. So we know through books like The Talent Code that the way people develop strengths is through overcoming challenges. So top athletes, top musicians, top chess champions, they all start out with simple basics and face increasingly difficult challenges until they became masters. And we as people with disabilities, face challenges every day and just have myriad opportunities to solve problems and be creative. So we we develop strengths around resilience and perseverance and creative problem solving and the ability to form and work in teams and communication skills, and those are the things employers want. So, so I think it's important to frame ourselves in terms of strengths. And I was talking to a group of high school age students, blind students here in Washington state, who were here in Seattle for a summer program. And there was one young man who was trying just to get that first job. And I said you're applying along with, you know, hundreds of other 18 year old kids for this job. But you are unique. You are probably the only one who has a blind kid, went through your high school, graduated, got whatever GPA you got. I said, I don't know what your experiences are, because we don't know each other that well, but Right, let's, let's say you know you took care of your younger brother and sister after school, while your while your parents worked, or you had a successful dog walking business, or you became famous for baking cookies for the bake sale, or whatever you've done something, something as a blind person, yeah, is really unique. Is going to set you apart from everyone else. So, you know, as a person with a disabilities, there's a point at which you if you have a visible disability, there's a point at which you choose to disclose that disability. And my first job seeking out of college with my I had a phi, beta, kappa, kumad, and all very successful academic record, and I would send. Out my cover letter and my resume, and I'd get a phone interview and go, great. They'd asked me to come in for the in person interview. I'd walk in with my long white cane, my Blasi stylus, my braille paper. Yeah, you know, they'd get very confused. Yeah, never met a blind person before. Yes, yes. How could this blind kid do this job applying for Right, right? So then I started disclosing in my cover letter. Then I wasn't getting the phone interviews, but I, I think to position the your lived experience of disability as a as a strength and as a uniqueness, and use it to distinguish yourself, especially if you're young, looking for that entry level job, everyone else is applying as a dime a dozen. Their resumes all look the same. They've all done the same thing. I graduated from high school. I got a 3.8 GPA on the track team. I was on the debate team. Yes, say you, man, what? Have you done as a blind person that is going to blow this person away? Now, one of the people I interviewed in my dissertation sent in an application to a job they really didn't think they had a shot for, and they attached a clipping about how they had done an Iron Man Triathlon as a blind person.

51:26

Whoever read that, called them and said,

51:29

I need, I need to meet you. I cannot believe that you did this Iron Man. I do Iron Man triathlons. I don't know how a blind person could do this. I need to come in. They ended up getting a great job so and then as far as to say disability and entrepreneurship or self employment, it's very similar in that the lived experience of disability allows us to develop the strengths that lead to success as entrepreneurs. And there's really a nice body of scholarship around that there are researchers. I've met people with disabilities who this is their field of study. How does disability lead to successful entrepreneurship? And it's the same thing. Develop a perseverance, and you don't you don't say no, and figure out creative ways to get things done. You know how to put a team together and how to communicate. Know how to analyze and manage risk. And so in the US, as I mentioned, only 35% of us are working people with significant disabilities as a point, as opposed to 70% of the general population, and of that 70% of the general population, about 12% are self employed. So I'll just say self employed as a standard for for entrepreneurship, and of the 35% of us who are employed, only 6% of those are self employed. And more than half of us work for the government or for nonprofits. So I just think there's a great field of opportunity for blind people with disabilities to be business owners, to be entrepreneurs. So you would give a thumbs up to entrepreneurs, yeah. And you know, it's all Donna. It's all about the fit between. So we have impairments, right? Yeah. So I'm blind. I have a visual impairment that my eyes do not have sight. Yeah, if I am, if I'm in certain situations I am not, I'm not disabled at all. Example I use is I'm running a meeting, board meeting. I have my frail agenda. I've got my financial reports, I got everything I need, and Braille I can run the meeting just like anyone else. If I walk in and there's no braille, and you hand me a stack of print, then I'm in a disabling situation. Visual Impairment won't allow me to interact effectively with the environment, the environment being that stack of print. So we operate in these environments, the built environment, the digital environment, the social environment. So to be successful in career, there has to be a decent fit between us, our impairment, and these environments. But if you're self employed, you get to create the fit people with disabilities, so you know people have chronic illness, maybe they can only work three hours at a time. Take a two hour break. If you own your own business, you can design it that way. If

54:35

you know you need a an assistant

54:39

to do such you don't have to go through processes to get approvals. You get what you get what you need. So there's just so much more flexibility to customize the fit between yourself and your work. And I've discovered that now that I've had this consulting practice for a little over two years, I worked for. I worked in banking and finance, which was corporate for 10 years, and I was the only person within those organizations that I knew of. And then I worked for nonprofits that focus on blindness, so those organizations were very predisposed to providing accommodations and supports, and still, I ran into some challenges. But now that I have my own business, I have a great sense of freedom of how I use my time, how I decide what to work on and what not to work on, who I decide to do projects with who I decide not to so I think it's, I think it can be a beautiful

55:50

thing. How can we promote entrepreneurship as a strong alternative to workplace? Employment? Me, I as an entrepreneur, have been since year 2000 I am for entrepreneurship, and I agree with a lot of what you said. How can we go about promoting entrepreneurship to our community?

56:16

Well, one thing I have come to believe is, rather than creating anything new that's disability specific, a more effective strategy is to find programs that are already working and work with them to become more inclusive of people with disabilities. So there's quite a few programs, apprenticeship programs, business development programs that have special folks focus on bringing in underrepresented populations. They usually have started with race and gender or geographic location. People live in rural areas, people live in urban areas, whatever it happens. But there are successful, proven programs out there, entrepreneurship centers, entrepreneurship programs here in the US, the Small Business Administration, apprenticeship programs. And my strategy is to find those winners that are already doing great work, that have proven track records, that have not as most of them, have not put time, effort, resource, into being disability inclusive, and have those conversations. If you have this great program, it's a wonderful track record. Can we have a conversation about how I can help you be inclusive of people who are blind in your program as a for instance. So I both, I mean, they the internet search engine is a beautiful thing. So I would, if you're interested in entrepreneurship, I would find an entrepreneurship program

57:57

that either is in your area,

58:00

physically, or serve you virtually, and I would, I would connect with the programs that are already out there. Say, Hey, I just read about your organization. Super excited. I want, want to explore getting involved. I am blind, I use screen reading software, or I'm a wheelchair user, or deaf, I use sign language interpreters, or whatever it happens to be. And let's have, let's have a conversation about how I can

58:37

take part in your training, be part of your program.

58:41

Great. I know we're running out of time, but I have to ask this question before I let you go and this is it's this, what are some of the more pivotal moments that you could think of while you were working for the lighthouse in Seattle that has helped to influence influence your leadership? I Oh,

59:02

I would say the transformational power of employment.

59:11

Young Lady

59:14

I'll call, I'll call her Sue, even though that's not her name,

59:18

blind,

59:22

developmental disability,

59:25

living at home,

59:28

not expected to do anything after high school, her parents expected her to live with them The rest of her life. Yeah, they went to a local chapter meeting of an American Council, the blind chapter. There were some people there who worked at the lighthouse. They talked to her and her parents and said, you know, there's a there's a job for her. She she can come and earn a living, and now she's living in an apartment.

1:00:07

She takes the ferry across the

1:00:10

Seattle every day, gets on a bus, comes to work in the lunchroom at lunch with her, with her friends,

1:00:19

living, living a life.

1:00:24

So many examples like that, a gentleman who was blinded through gun violence, early 20s, criminal, criminal situation, incarcerated, again. Just thought, you know, would never be able to amount to anything in life, aerospace machinists, married kids, house so no, not just the financial rewards of work, but just the dignity of work. This the identification that comes with that in our society, there's such a strong, positive self identification that comes with with being employed or earning your own way, being contributing person. So just, just those firsthand and I, you know, whenever I thought I was having a difficult, challenging day with whatever budgets or board meetings or whatever, I would just go to the lunchroom when people were taking a break from work out on the machine shop floor or the manufacturing floor, and just sit with people. I'd say that's that's the main thing.

1:01:40

Dr Curtis, any final thoughts for me, as you know, overall, what thoughts would you share with regard to, how can one remain positive? What can they do to to, you know, be a part of society and not become one who thinks, Well, I'm just a drag on society. I am just a gift, not a gift, but a token of society. What? What are your final thoughts? What sort of advice would you share with others? Uh,

1:02:17

join. Join something. Some people love to be parts of big organization. Some people like to just have a couple friends, but don't, don't, unless you're a hermit, you're interdependent on other people. Anyway, yeah, we all depend on one another. We all provide different things for each other. So make, make, make connections.

1:02:44

And if your thing is playing

1:02:47

role playing games, find some other blind people play role playing games. Your thing is coin collecting, people who do point collecting, if your thing is animals, find some people who also are passionate about welfare of animals, so it doesn't have to be formal, it doesn't have to be big. It could be your neighborhood. It could be your church or your synagogue or your place of worship or the local clean up the park day or whatever, whatever can motivate you to connect.

1:03:26

Dr Cook, it was a pleasure and a privilege interviewing you over the last hour. I really appreciate it. I want to thank Aaron for having brought us together.

1:03:35

Yeah, all the time flew by. Yeah, that's when you know you're having a good time.

1:03:38

I did have a good time. Yeah, I had a lot of fun. And if you ever wanted an interview from me again, I would be more than happy to interview

1:03:47

you again, and I'd like to interview you. Oh, yes,

1:03:51

anytime, we'll get Aaron to set this up. Thank you so much, sir. I appreciate it

1:03:56

nice to meet you.

1:03:57

You too. You take care, right? Have a wonderful week. You too. Now, thank you. Bye, bye, bye.

1:04:06

Donna wants to hear from you and invites you to write to her. At Donna jarred hand@gmail.com

1:04:13

Until next time you.

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