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

Transcript

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

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Unknown: Music.
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Greetings, Donna J jardhan, LLB, ACSP and MBA invites you to
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listen to her bi weekly podcast. Remarkable world commentary.
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Here, Donna shares some of her innermost thoughts, insights,
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perspectives and more with her listeners. Donna focuses on
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topics that directly affect the future of kids, especially kids
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with disabilities. Donna is a blind advocate, author, sight
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loss coach, dinner mystery producer, writer, entrepreneur,
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law graduate and podcast commentator. She has decades of
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lived experiences, knowledge skills and expertise in access
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technology and information as someone who has been
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internationally recognized for her work and roles. She just
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wants to make things better than possible.
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Dr Kirk, it's an honor and a pleasure for me to be
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interviewing you. I've heard a lot about you as you know, I
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live in Canada. I'm a Canadian advocate, but, you know, we get
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a lot of news from the United States on advocacy and
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everything else, and I am just so delighted to be interviewing
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you. So are you ready?
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It's a pleasure. Yes, I'm very ready.
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So, Dr Adams, you lost your vision at a very early age. How
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has this helped to shape your approach to education and
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advocacy.
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Yes, My situation is somewhat unique, and I was born sighted,
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and had full vision until I was five years old, and I was in
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kindergarten, in public school, and my retinas both detached due
2:00
to hemorrhaging of some blood vessels in my eyes, the pressure
2:04
detached the retinas, and it wasn't wasn't detected until
2:08
detachment was happening. So I had an emergency retinal
2:13
surgery, and then a series after that, but I essentially became
2:17
totally blind within just a couple of days. So it was a
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very, very rapid transformation, and that resulted in a couple of
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things. First, my my parents were told they were young. They
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were in their mid 20s. They were told that I could not come back
2:36
to the neighborhood school, that Blind Children and Deaf children
2:42
needed to go to the state residential school. And we live
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north of Seattle, and my parents visited the Washington State
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School for the Blind in Vancouver, Washington, and were
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not pleased with what they saw there. As far as academic
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activity, they were both teachers and I had my retinal I
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was referred to a retinal specialist in Portland, Oregon.
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Someone there said that Oregon State School for the Blind was
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great, and they visited, took me, and I remember visiting, and
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they thought it was great, and I thought it was great. So they
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moved, quit their jobs, and moved the family. So I went to
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school for blind children for first, second and third grade,
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and I got three things there that later on in life, as a
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researcher, I discovered our strong predictors of successful
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employment and thriving as a blind adult, right? And one of
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them was the acquisition of blindness skills, and I was
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totally blind, so there was no question, did I need to learn
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braille? Did I learn need to learn how to travel safely and
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independently and confidently with a long way cane, right? Did
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I need to learn? They call it keyboarding now, but it was
4:05
typing then. Did I need to learn how to type on a typewriter so
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that I could go to public school and succeed in public school so
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I got my blindness skills down, rock solid as a 678, year old.
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And you know, I know now through research on my own research on
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for my dissertation, that you know the specialized skills
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related to disability are essential for for thriving as an
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adult with a disability. So no matter where a person that is
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that in their journey, you know, the stronger their their
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specialized skills can be, the better. And that that is
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exemplified in a concept called the expanded core curriculum,
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which the expand American Foundation for the Blind and Dr
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Phil Han developed so many years ago. So, but it basically said a
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blind kid needs to learn everything the sighted kids need
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to learn, plus nine other things, which is assistive
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technology, orientation, mobility, self advocacy,
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Braille, etc. So that was the one thing, the blindness skills,
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then the other. The other thing was high expectations, and that
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the school held high expectations for all the
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students. I was there with 120 other blind kids were expected
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to be performing at grade level. My parents were teachers. My dad
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was a high school basketball coach. They had high
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expectations of myself and my younger brother and sister, and
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so we see that not every blind kid is born into that situation
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where people hold high expectations of them, and that
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can lead to many problems that, including internalizing those,
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those low expectations, over protectiveness, those, those
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types of things. So I got I got my blindness skills, I got my
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high expectations. And then the third thing was a strong
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internal locus of control. And that means that you feel just
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deep in your deep in your bones, you know that you can overcome
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obstacles. You can forge your own path. You can accomplish
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what you want to accomplish. And that's opposed to a an external
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locus of control, where you where you believe things are
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happening to you, and there's not much you can do about it.
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And so I was, I was given those three things, and you asked, not
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so super long winded way to answer your question. But as far
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as informing advocacy, it's like understanding that that not
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everybody was given those things, that so people, some
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people are different parts of the blindness journey. Some
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people haven't had opportunities to acquire those skills. Some
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people have lived with low expectations of them offered to
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them. Some people haven't had those opportunities to develop
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that strong internal locus of control. And how and how do we
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ameliorate that? How do we dismantle that?
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Would you say that that your parents, like, you know, because
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of having such great parents, that was a very large influence,
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I played a large influence on how you structured yourself, and
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how you structured your abilities, capabilities, you
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know, in moving forward and seeing the world in a different
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light, in that, you know, we are not all fortunate to have great
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parents to influence, right? I had great parents, and I am here
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today because of them. Would you see that, that having had
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terrific parents helped you out,
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then I'll, I'll say terrific with a with a caveat. So they,
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they were terrific in some ways, in that at they had those high
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expectations of me. They expected nothing less than a on
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a report card. They expected me to do family chores. They
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expected my dad was a coach, expected me to be involved in
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athletics and expected me to be involved in extracurricular
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activities. They did not provide a lot of psychosocial support or
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kind of empathy around how challenging it could be. I grew
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up in small towns in the Pacific Northwest, I was always the only
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only blind kid in my school. The teen years were particularly
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rough, as you know, in my towns where I lived, when kids turned
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16, they got driver's licenses,
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they usually got some sort of a job.
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So those, those things were challenging. I was pretty,
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pretty isolated. I would say pretty I'd say in a grief, grief
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cycle. When I was 6789, 10 years old, I think everything was
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pretty okay. I experienced her, you know, I was experienced some
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bullying middle middle school. We were not connected with any
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blindness organizations. I did not know any other blind people.
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No, I didn't have any blind adult role models. My parents
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had never met a blind person before. My retinas detached.
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They knew me, right, but I would say terrific. On some fronts,
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they did the best they can. They did the best they could. On some
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of the other aspects, i. I would hope that a blind child today,
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if they were fortunate enough to to be born into a family with
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the resources and structure, would use things like the
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internet and do research and, you know, connect with other
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blind people and find some some community, which I certainly
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did.
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So it sounds as if you had to summon your own inner strengths
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to deal with the expectations of your parents, and somehow you
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managed to navigate rough seas and to be able to be where you
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are today. Would you agree with that statement?
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Yeah, I'd say so
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couple things that came to mind. I think reading. I just was an
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avid reader. I was hospitalized a lot. I had a number of eye
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surgeries between age five and 12, and I would, this is before
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laser surgery. So they they'd actually go in there and do
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things, and then I'd have to lay a mobile one of bed for 10 days.
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And so I became just an avid reader. So I just read and read
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and read. And that just opened up a world for me, and gave me,
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gave me some of those role models, you know, on the pages.
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So I think reading was super important. And then I think as
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young kids often, do you know, adopting kind of heroes. My My
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family was really into sports. So sports heroes like Wilmore
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Rudolph, who had disabilities related to being in a childhood
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house fire, you know, became world champion track athlete.
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People like that come to mind.
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So it sounds as if like, despite, you know, the high
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expectations from your parents, you developed your own
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strategies to deal with, you know, like being the only blind
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person in your neighborhood or at school or whatever, you
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developed your own strategies to deal with all of this. Right?
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Would you say yes? I'd
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say some consciously, some unconsciously, yeah,
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I'd say just associate,
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which hasn't, hasn't, always served me well as an adult. You
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know, the ability to kind of shut off the emotions, kind of
12:38
while you're, you know, while all myself off from some of the
12:41
more distressful things.
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It's not an easy world to navigate, sir. It's very
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difficult when you know you're on your own. You have parents
12:50
who are really expecting you to do well. You want to do well,
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but you know, there are things that we all have to deal with in
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many ways, right?
13:02
Yeah, yep, and the indomitable human spirit.
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And again, I think being a kid,
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I think it's a whole different ball game. If you've lived into
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your adulthood as a sighted person, then you become a blind
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person. I, I, I know, just from speaking with people, what a
13:22
different experience that is from what I have, because
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children are so adaptable,
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curious. Do you remember anything about the sighted
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world? I know you lost your sight at age five years old, but
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do you remember anything at all that could have helped you? You
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know, could have been a reference for you to build on, I
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think probably, probably some spatial relationships. I don't
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remember colors if you if you say red or blue, I see in my
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mind the braille characters for red and blue. I don't I think
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mountains trees, like, I say my dad was a basketball coach. I
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was like, in high school gymnasiums, which kind of big
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open spaces, parks. We were pretty outdoors family, so out
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in boats on the water and on the beach and things like that. So I
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haven't dug into it formally or scientifically, but I but I
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think some of those concepts of spatial relationships that are
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are internalized have been helpful to me, especially around
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orientation and mobility. I have pretty good on animals, as far
14:43
as being plunked down at a in a hotel or a conference center or
14:46
an airport or somewhere, and, you know, not, not, not taking
14:51
terribly long time to get oriented to the space and being
14:54
able to navigate through structured discovery. And I, I
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think some of those spatial relationships that. Are deep,
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buried deep down there the subconscious somewhere have been
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helpful, because
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I've been told that I was born with little or no vision and
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then got a whole whack of it when I was a teenager. But I've
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been told that sometimes those who are born with vision and
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then they lose it. It's a difference between them and
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someone who was born with little or none. Would you agree with
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that?
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Again, not scientifically based, but just from talking with
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people and observing people. I'd say so, okay, all right,
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how has your PhD in leadership and change influenced your
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approach to advocacy and organizational management.
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My dissertation work. My dissertation is called journeys
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through rough country, an ethnographic study of blind
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adults successfully employed in American corporations. So I
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interviewed blind people who self described as successfully
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employed at name brand companies that you would all know,
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Microsoft, Amazon, Apple, Google, Facebook, Chase, Bank,
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AT and T, etc, etc. And I just gained so many insights from
16:27
people reading the literature reviewed in order to situate my
16:33
research in the in scholarship. I read every article published
16:41
about blind deployment over the past 20 years, so I got a very
16:46
deep grounding in in the research and the realities. And
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it's a very complex fact that in the US, only 35% of us are in
16:55
the workforce, as opposed to 70% of the general population. And
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that number hasn't changed much. No, it's a complex set of
17:05
problems which don't, don't lead to easy, easy solutions. But I,
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I read the academic studies and the research and the data, and
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then I talked to the people, and I confirmed a lot of what I
17:21
read, but, but gave me some some new insights. And, you know,
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there were nine themes that came out of it, but the first and
17:31
foremost was when asked, you know, your your describe
17:34
yourself as successfully employed. You know, what do you
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base that on? And everyone, in some form or fashion said, their
17:40
compensation, their salary, what, what they were earning?
17:43
Okay, all of them had that strong internal locus of control
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that I talked about, that I got at the School for the Blind in
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Oregon, but many of them attributed that to an experience
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or series of experiences, mostly in the teen years or or
18:07
childhood into the teen, maybe early 20s. A lot of it had to do
18:11
with something physical, outdoors. One person who'd been
18:18
a senior executive at a telecom company for 40 plus years. Her
18:23
story was that she and her 10 year old, when she she and her
18:27
twin sister was cider were 10 or their parents sent them to a
18:31
sleepaway camp, and when it came to the horseback riding, you
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know, the counselors told the blind girl, no, no, you can't do
18:39
the horse riding. That's too dangerous, you know you're gonna
18:42
have to sit here. Yes, and that night, she and her sister got
18:46
stuck out of the cabin and got a couple horses out, went riding,
18:50
and she just remembered the exhilaration, the freedom of
18:55
being with her sister and the night riding the horses. And
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another person was a young, 1213, year old boy living in New
19:05
York City and the neighborhood, boys would all ride their bikes
19:08
and do these bicycle tricks, you know, jump off the curb and ride
19:12
the bike and stand up on the seat. Yeah. So he, you know, he
19:15
did that, ended up in the emergency room more than once.
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Oh, my goodness. I often, I often, tell parents of blind
19:23
kids, you can gage what a good, how good of a job you're doing
19:28
as a parent of a blind child by how many times you need to go to
19:30
the ER, but another person who was denying her blindness and
19:38
not using a cane and how to had a bad fall. One wandered into a
19:46
construction site and fell down some stairs and got pretty badly
19:49
injured, and she ended up going to a blindness rehabilitation
19:54
center where they took her rock climbing and snow skiing. So
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everyone had. Something that gave them that sense that they
20:04
could overcome and could be creative and could forge their
20:09
own, their own path. And then, you know, everyone talked about
20:14
the need to have knowledge, skills and abilities. You had to
20:16
compete with everyone else in the workplace, and kind of like
20:20
that Hispanic core curriculum, you also needed to be better,
20:23
smarter, faster than everyone else, and then everyone
20:29
expressed disappointment, and that was the theme that didn't
20:33
come out in the research studies that I read, because they were
20:37
really data based. And there's not a lot of graphic research
20:42
out there, but everyone expressed disappointment that
20:48
people who were less senior than them, had less knowledge, skills
20:53
and abilities, were promoted beyond them, that there was no
20:57
one above them on the org chart with a visible disability, that
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they were the only person in their organization with a
21:04
disability who got that far, that they had to keep fighting
21:10
for accommodations all the time, that more than once people
21:15
talked about they came in one day and the company had changed
21:18
some system, and they hadn't taken accessibility to an
21:22
account into account, so all of a sudden they couldn't do their
21:25
job. And you know, they have to keep fighting over and over
21:29
again for accommodations and accessibility. So so everyone
21:32
had had that disappointment. So I would say the way my Ph D has
21:41
helped me as a couple of things. It's the PhD in leadership
21:46
change. So I studied leadership, and I read a lot about
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leadership and understanding the various forms leadership can
21:53
take and how important leadership is. If anything truly
21:58
transformational is going to happen, we need leadership, and
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that has led me to really be passionate about developing,
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helping develop, supporting the development of blind people as
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leaders. And then I think the other thing was just the
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grounding and the reality of people's situation. You can read
22:21
these articles and these data sets and these studies and these
22:24
comparisons of of data, but then when you really talk to people
22:28
and hear about their lived experience, it just really
22:34
establishes a deep establish for me, deep, and again, deep in my
22:41
bones that these problems are really challenging, really
22:46
complex, really difficult, and it's going to take a lot of
22:53
persistence. It's going to take a lot of collective action. It's
22:58
going to take a lot of alignment
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and
23:05
an understanding that in order for us to make anything really
23:12
significant happen, to change some of these numbers, we're
23:15
going to have to get government, corporate, nonprofit and the
23:22
community and individuals aligned
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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
23:38
forge through these, this, this so called Glass Ceiling. I you
23:44
know, my personal opinion is that they do exist. But how do
23:47
we do that? And I think you just said it, it's getting everybody
23:51
to grow in the same direction. How can we do this? How could we
23:57
influence government? Is it like strength lies in numbers. More
24:03
legislation like I know in Canada we are still fighting
24:07
because, yeah, you know, we, we enacted the accessible Canada
24:12
Act in 2019 but I don't think much has changed here in my
24:17
country. What would be your advice then to, you know, the
24:22
younger folk coming up, you tell them, you know, there is a glass
24:26
ceiling that we have to crack and break. What can we do?
24:31
Well, I think glass might be a little weak of a metaphor. I
24:37
think it's stronger than glass. Yes. I mean, if you look at
24:43
boardrooms and C suites, you know, you see some women, you
24:48
see some people of color. You really don't see many people
24:53
with disabilities. I was talking to a gentleman here is a
24:59
wheelchair. You. Or he's the head of a organization called
25:03
Arts Fund here in Washington State, and they fund about 700
25:07
arts organizations, and they did a democratic traffic survey of
25:13
the 700 organizations that they funded, but less than 3% of
25:19
their senior staff or board members were people with
25:22
disclosed disabilities. So if you if you look at demographics,
25:29
you would say about 15% of the working age population in the US
25:33
have disabilities. And then when companies report out on the
25:37
numbers of people with disabilities they employ, it's
25:39
always one and a half to 4% so there's a lot of people with
25:43
disabilities out there who aren't disclosing. Disabilities
25:46
that aren't
25:49
they are free to disclose. Yes,
25:52
yes, yes, yeah. So you know, 70% of disabilities are not visible.
25:57
So you know, ADHD and anxiety and depression, neurodiversity
26:02
and all those things. So I I think again, no simple answer,
26:08
Donna, but I think it's based in community, and we have so many
26:15
wonderful tools now, with the Internet search engines, to find
26:21
and develop community. So to find those leaders who have
26:31
influence, have a career, have social capital, who have a
26:39
disability, to encourage and create environments where people
26:44
can disclose disabilities, to find other people who share some
26:53
things in common with you around your disability experience, if
26:57
you're a parent with a disabled child, to find other families
27:00
have children with a similar disability, especially some that
27:06
may have trodden the path before you a little bit, have learned
27:11
some things they can share. So so I think it's again about
27:15
aligning those things, the government, the corporate, the
27:21
nonprofit in the community, but I think it's really, really hard
27:24
to do that at a macro level all at once. I think as individuals,
27:30
our our best strategy is to be involved and do that through a
27:37
community framework. So join something, but attend things,
27:46
committees, meetings, volunteer to be in leadership positions
27:52
for young people. I tell them, you know volunteer, because the
27:56
research shows that volunteer work is just as strong a
28:00
predictor as paid work as a young person for future
28:04
employment success. So you know, there's a there's an
28:08
association, a society, a group for any interest, whether it's
28:13
virtual or a person or a hybrid that you can find on the
28:16
internet. So I say, join something and Volunteer.
28:21
Volunteer one, one definition of a leader, I like, is anyone
28:24
who's willing to help right now. So well, volunteer for that,
28:29
that committee, lead, lead something start out small, if,
28:34
if you need to develop those skills. But I guess that's a bit
28:40
of a halting answer, because there's, there's no easy answer.
28:43
But I think find those allies, find those elected officials who
28:47
have a disabled child or disabled brother here in the
28:51
United States, the senator from Iowa, Tom Harkin, who's retired
28:54
now, was a great disability advocate leader and really drove
28:58
a lot of legislation. He had a brother whom we dearly loved who
29:02
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
29:17
you're if you're looking for a place to work. You know, I tell
29:21
people, look, look at the company. See if they include
29:24
disability in their statements around diversity, equity,
29:29
inclusion, if they're big enough, find out if they have a
29:31
disability related employee, resource, resource group, that's
29:35
an automatic group that that you can align yourself with.
29:40
I have two questions of questions for you based on what
29:43
you've been telling me right now. One is, when does voluntary
29:50
work become paid work? And the second question is this, of all
29:57
the types of disabilities that you have in case. Encountered,
30:01
which is the one that is most difficult for persons to engage
30:07
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
30:26
disabilities are expected to work for free, particularly
30:33
around research, or asked to participate in research studies
30:37
and focus groups and share our knowledge and our lived
30:41
experience. Yeah, sometimes that's to help a company develop
30:44
a product that they're going to sell and make a profit from. So
30:48
our labor is being appropriated, and sometimes it's very
30:53
challenging. It's it can be emotional labor to talk about
30:57
your disability. And so I would say, if it's a if it's a
31:02
research situation, for a corporate entity or a government
31:07
entity, then people with disabilities should be paid, and
31:10
they should, we should ask for that, and ethically, we should
31:15
receive that. I think, voluntary work should be seen as I would
31:25
hope that most people in our society do something
31:30
voluntarily, whether it's formal or not helping, helping a
31:33
neighbor, helping a family member, if you want to do it
31:38
more formally within an organization, I think it should
31:43
be treated. I think people with disabilities should treat
31:46
volunteer work the same way anyone else does. It's something
31:50
you do for the community, for the good of the order. The fact
31:56
of the matter is, however, that if you are a job seeker, if
32:00
you're trying to start a career, if you're trying to develop a
32:03
resume, that volunteer work can be helpful, from a practical
32:08
standpoint, to give you connections, help you build
32:10
skills, etc. So I don't know, I don't know if there's a point at
32:17
which volunteer work becomes paid work. I would hope that if
32:21
a person wants paid work, they can achieve that. Volunteering
32:26
could be a step toward toward achieving that, as far as far as
32:32
disabilities for people to engage with, I'd say mental
32:36
health. And again, that's not based on anything that's not
32:42
based on any research I've done, or anything peer reviewed
32:46
research I've read. I think that's just through my lived
32:49
experience of being involved in a lot of disability
32:53
organization. There's a great fear of blindness. Yes, there
32:57
was a study some years ago, Johns Hopkins, Johns, Hopkins
33:01
and Baltimore did it that people would rather loot, have a limb
33:05
amputated or be diagnosed with cancer than we become blind. So
33:12
there's a great fear, and it's, you know, it's primordial, it's
33:16
many societies. It's considered, you know, a curse for some sort
33:20
of wrong, wrong, right? So there's a lot of stuff there,
33:24
but I I think in our western societies, I think mental health
33:31
disabilities are the most challenging for people to engage
33:34
with.
33:36
But you know, what would you how would you analyze this
33:42
circumstance whereby the person is approached to do some or
33:49
participate in a research project, and when the person
33:52
says to the researcher, well, how much will you be paying me
33:57
for my experience, my Knowledge, my skills, and you know,
34:01
everything else on my expertise, and they say, well, we don't
34:04
have the budget to pay. Would you advise a person then to say,
34:09
Well, I'm sorry, but I need to be paid. Or would you advise a
34:14
person then to continue on with the researcher?
34:19
Well, I think that's a judgment call based on the type of
34:23
research and the organization that's doing the research. When
34:27
I was doing my PhD research, I certainly did not have the
34:31
capacity to pay my participants. However, the conversation was
34:36
around the fact that I was doing research that would be valuable
34:39
to help change the landscape of employment for people who are
34:45
blind, it would be data that would be publicly available,
34:49
that it could be it would add, add to the body of research that
34:53
would help, help change, change the landscape for for
34:57
employment, and in at least some small way you. So people are
35:01
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
35:20
research they're doing? Yes, then there should be some form
35:24
of compensation.
35:26
I would say that's a conversation.
35:32
There are standards for corporate research that say
35:35
participants need to be paid if it's a if it's a startup
35:40
entrepreneur who doesn't have any cash, how about, how about
35:45
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
35:57
directly from what they're gaining from you, then I think
36:00
there should be a pretty clear conversation that it's, it's
36:07
ethically important that there be compensation given to the
36:10
research participant, if it's for if it's for scholarship,
36:14
yeah, I think that's a different story.
36:17
Because I think for me as an entrepreneur, I often run into
36:21
these circumstances whereby, you know, well, we don't have the
36:24
budget, and I'm saying, Well, I'm happy to help you if it
36:26
benefits others, but I also got to earn my living as well. Most
36:33
of the time they just walked away. But anyway,
36:38
doctor, well, they Well, they missed out valuable wisdom and
36:43
lived experience.
36:44
Dr Kirk,
36:46
what would you say was one of their most memorable advocacy
36:52
experiences? And how did you overcome it?
36:59
I can tell you one that I didn't overcome, and that was when I
37:04
was in high school in a small, small town, Snohomish
37:08
Washington, our north of Seattle. And there were probably
37:12
30 of us kids who were kind of the college bound kids. So right
37:16
senior year went into math, analysis, first period, then the
37:19
physics second period, and then walked into chemistry third
37:23
period, and the chemistry teacher said, no, no, you cannot
37:27
take chemistry. That's a safety issue. You need to go to the
37:31
office ask for a different class. Oh, no, I was quite
37:35
upset. I went home and told my parents, whom I said earlier,
37:38
were both teachers, and they said, Well, if Mr. So and So
37:44
says can't take chemistry, then that's that's that. So no, I was
37:49
assigned a study hall, and I just sat, I say I read trashy
37:53
novels third period my senior year in high school. But now
37:58
I've, I I've met blind people who teach chemistry in
38:02
universities. I've met blind people with PhDs in chemistry
38:07
who are entrepreneurs. So I know that that was not accurate
38:13
information I was given, but I did not have self advocacy
38:17
skills as a 17 year old, I did not know how to advocate. I did
38:23
not know. Today I'd say, Well, that was, that was before there
38:30
was IEPs, you know, individual education plans. So now it's
38:35
families need, need to use those tools and get everything in that
38:39
IEP that they want their student to have. And you know, if they
38:42
need, if they need to bring in 20 people into that meeting to
38:46
advocate, that's what they need to do. We weren't connected with
38:50
any blindness organizations, right? You know now I'd say
38:54
call, call your local chapter of the council the blind, or the
38:57
Federation of the Blind. So I'd say those that was an experience
39:04
where I did not have the tools I needed to deal with that
39:10
situation. I deeply regret it, but that was just the fact of
39:14
the matter. I didn't have the tools or the networks or the
39:18
connections to do anything about that, as far as a success, I
39:25
would say, when I was the CEO of the Lighthouse for the Blind
39:29
here in Seattle, which is a social enterprise employing
39:33
blind and deaf, blind people and businesses, including aerospace
39:37
manufacturing, and has had a contract since the 1950s making
39:42
parts for all the Boeing airplanes to engage at a state
39:47
public policy level, when the Boeing Company was starting to
39:54
outsource manufacturing to other states and the state of
39:58
Washington was.
40:02
Was putting together a strategy to
40:07
build and maintain and grow the aerospace manufacturing base
40:10
here in the state that I intentionally joined two boards
40:18
of directors, one for the Association of Washington
40:20
business and one for the aerospace futures Alliance and
40:25
the state created an apprenticeship program called
40:29
the aerospace Joint Apprenticeship committee
40:33
program, which was designed to bring people into The aerospace
40:39
industry through apprenticeships and becoming Certified
40:42
Journeyman apprentices. And I advocated from the very
40:45
beginning for inclusion of people who are blind in the
40:48
program. And it was set up through partnership with the
40:53
community college, Green River Community College, where the
40:57
academic portion of the apprenticeship would happen, and
41:00
we work with them to make sure all the curriculum materials
41:03
were accessible. There's a practicum, hands on machining
41:08
portion, which we arranged to have done at the lighthouse
41:11
where we had the adapted computer numerically controlled
41:15
milling machines adapted with jaws and screen magnification
41:19
and voiced so that the blind people could do everything at
41:24
the same level as the sighted people. And while I was still at
41:27
the lighthouse before I was hired to go to the American
41:31
Foundation for the Blind in 2016 I attended the first AJAC
41:37
aerospace Joint Apprenticeship committee apprenticeship
41:40
graduation at the Museum of Flight, four of the first 25
41:46
graduates statewide, where people were blind, and I
41:50
recently received the newsletter from the Lighthouse for the
41:53
Blind, and they were celebrating the 20th blind person who'd gone
41:58
through the four year program and become a Certified
42:02
Journeyman aerospace machinist, which is a beautiful, solid
42:07
career. Wow, and so that, I think I would say is, is one of
42:14
my proudest accomplishments, because very strategic, and it
42:20
was very intentional, and it worked. It's still working, so
42:25
that that's a beautiful thing. I'm no longer involved. I'm not
42:29
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
42:44
our kids who are and I say kids loosely here. How do we prepare
42:50
those getting ready to leave high school, and those who have
42:54
left high school and now looking for a job? How do we prepare
42:58
them to become more effective and powerful advocates.
43:07
Again, no, no simple solution. I think it's multi pronged. I
43:11
think a lot of the things I've said before, I could kind of
43:15
summarize in this context. One, one is join something. Yeah,
43:21
your age older. If you have a notion of a career, find a blind
43:31
person who's doing it. 95% of the jobs you could think of,
43:35
there's some blind or visually impaired person doing it.
43:38
There's blind auto mechanics and restaurant owners and novelists,
43:47
attorneys, which woodworkers, you name it, and then ask, ask
43:55
for informational interviews. I'm a huge proponent of that. If
43:59
you're a young, blind or visually impaired person, and
44:03
through internet search, you find a blind adult who's
44:08
successfully doing what you're interested in. You call them or
44:12
email them or DM them, yeah, and let them know you'd like to talk
44:16
to them. They are 99.9% are going to be thrilled to hear
44:22
from you and excited to talk, to talk with you, so that those are
44:27
two things, join, join something that you're interested in. Find
44:33
people are doing what you're interested in. And then a lot of
44:38
it is hard work. It's skills and you need to be able to travel
44:41
independently, yes, using a long way cane or a guide dog or
44:47
whatever, whatever, whatever method you're going to use. And
44:50
you need to be able to use assistive technology, because
44:53
you need to be able to work on computers. 90% of the jobs are
44:57
going to require you to do that. So. You need to be able to use
45:01
screen readers or magnification, what, whatever.
45:07
And then,
45:10
you know, I don't think you necessarily, you know, some some
45:12
occupations still need a four year degree fewer and fewer. So
45:17
I think understanding where you can get education and training
45:20
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
45:43
let let that interest, rather than some survey of where the
45:50
jobs are, but let your own personal interest kind of drive
45:53
you to explore, to start connecting with people many any
45:57
profession you can think of as a professional association, you
46:00
can sign up for their newsletter and their websites. You can look
46:04
at, if you live in a large city, there's going to be meetings and
46:09
conferences so but follow. Follow. Follow your interest and
46:15
your curiosity.
46:17
Now you mentioned that you've always spoken about having more
46:22
participation of persons with disabilities or those who are
46:25
blind and vision impaired in the workforce. What are some of the
46:29
strategies you think that can be used by us? And I know you've
46:34
touched on these before. And also, my my second question to
46:39
this, what do you think of you know, most people like to say,
46:43
well, you know, I'd like to work in the mainstream workforce.
46:47
What about the promotion of entrepreneurship as an
46:51
alternative? What do you think of that?
46:54
I think, I think very highly of that. So I think the main point
46:59
I want to make is I've hired a lot of people. I've interviewed
47:04
many, many, many people and hired many people and decided
47:08
not to hire many people. And I think we as people with
47:13
disabilities need to present ourselves as problem solvers,
47:18
not problem creators. To and to frame our lived experiences of
47:27
disability as a creator of strengths. So we know through
47:32
books like The Talent Code that the way people develop strengths
47:37
is through overcoming challenges. So top athletes, top
47:41
musicians, top chess champions, they all start out with simple
47:46
basics and face increasingly difficult challenges until they
47:51
became masters. And we as people with disabilities, face
47:57
challenges every day and just have myriad opportunities to
48:01
solve problems and be creative. So we we develop strengths
48:06
around resilience and perseverance and creative
48:08
problem solving and the ability to form and work in teams and
48:13
communication skills, and those are the things employers want.
48:18
So, so I think it's important to frame ourselves in terms of
48:24
strengths. And I was talking to a group of high school age
48:30
students, blind students here in Washington state, who were here
48:33
in Seattle for a summer program. And there was one young man who
48:37
was trying just to get that first job. And I said you're
48:45
applying along with, you know, hundreds of other 18 year old
48:49
kids for this job. But you are unique. You are probably the
48:54
only one who has a blind kid, went through your high school,
49:00
graduated, got whatever GPA you got. I said, I don't know what
49:04
your experiences are, because we don't know each other that well,
49:07
but Right, let's, let's say you know you took care of your
49:11
younger brother and sister after school, while your while your
49:15
parents worked, or you had a successful dog walking business,
49:20
or you became famous for baking cookies for the bake sale, or
49:28
whatever you've done something, something as a blind person,
49:33
yeah, is really unique. Is going to set you apart from everyone
49:37
else. So, you know, as a person with a disabilities, there's a
49:42
point at which you if you have a visible disability, there's a
49:46
point at which you choose to disclose that disability. And my
49:50
first job seeking out of college with my I had a phi, beta,
49:54
kappa, kumad, and all very successful academic record, and
49:58
I would send. Out my cover letter and my resume, and I'd
50:02
get a phone interview and go, great. They'd asked me to come
50:04
in for the in person interview. I'd walk in with my long white
50:07
cane, my Blasi stylus, my braille paper. Yeah, you know,
50:12
they'd get very confused. Yeah, never met a blind person before.
50:16
Yes, yes. How could this blind kid do this job applying for
50:22
Right, right? So then I started disclosing in my cover letter.
50:26
Then I wasn't getting the phone interviews, but I, I think to
50:33
position the your lived experience of disability as a as
50:37
a strength and as a uniqueness, and use it to distinguish
50:41
yourself, especially if you're young, looking for that entry
50:45
level job, everyone else is applying as a dime a dozen.
50:48
Their resumes all look the same. They've all done the same thing.
50:51
I graduated from high school. I got a 3.8 GPA on the track team.
50:55
I was on the debate team. Yes, say you, man, what? Have you
51:01
done as a blind person that is going to blow this person away?
51:07
Now, one of the people I interviewed in my dissertation
51:13
sent in an application to a job they really didn't think they
51:17
had a shot for, and they attached a clipping about how
51:20
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
51:33
Iron Man. I do Iron Man triathlons. I don't know how a
51:36
blind person could do this. I need to come in. They ended up
51:40
getting a great job so and then as far as to say disability and
51:43
entrepreneurship or self employment, it's very similar in
51:48
that the lived experience of disability allows us to develop
51:53
the strengths that lead to success as entrepreneurs. And
51:57
there's really a nice body of scholarship around that there
52:02
are researchers. I've met people with disabilities who this is
52:06
their field of study. How does disability lead to successful
52:10
entrepreneurship? And it's the same thing. Develop a
52:13
perseverance, and you don't you don't say no, and figure out
52:19
creative ways to get things done. You know how to put a team
52:22
together and how to communicate. Know how to analyze and manage
52:27
risk. And so in the US, as I mentioned, only 35% of us are
52:35
working people with significant disabilities as a point, as
52:39
opposed to 70% of the general population, and of that 70% of
52:43
the general population, about 12% are self employed. So I'll
52:48
just say self employed as a standard for for
52:50
entrepreneurship, and of the 35% of us who are employed, only 6%
52:55
of those are self employed. And more than half of us work for
53:00
the government or for nonprofits. So I just think
53:03
there's a great field of opportunity for blind people
53:06
with disabilities to be business owners, to be entrepreneurs. So
53:12
you would give a thumbs up to entrepreneurs, yeah. And you
53:15
know, it's all Donna. It's all about the fit between. So we
53:18
have impairments, right? Yeah. So I'm blind. I have a visual
53:22
impairment that my eyes do not have sight. Yeah, if I am, if
53:30
I'm in certain situations I am not, I'm not disabled at all.
53:34
Example I use is I'm running a meeting, board meeting. I have
53:39
my frail agenda. I've got my financial reports, I got
53:42
everything I need, and Braille I can run the meeting just like
53:45
anyone else. If I walk in and there's no braille, and you hand
53:49
me a stack of print, then I'm in a disabling situation. Visual
53:54
Impairment won't allow me to interact effectively with the
53:58
environment, the environment being that stack of print. So we
54:01
operate in these environments, the built environment, the
54:04
digital environment, the social environment. So to be successful
54:08
in career, there has to be a decent fit between us, our
54:14
impairment, and these environments. But if you're self
54:18
employed, you get to create the fit people with disabilities, so
54:23
you know people have chronic illness, maybe they can only
54:25
work three hours at a time. Take a two hour break. If you own
54:29
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
54:42
approvals. You get what you get what you need. So there's just
54:47
so much more flexibility to customize the fit between
54:50
yourself and your work. And I've discovered that now that I've
54:53
had this consulting practice for a little over two years, I
54:59
worked for. I worked in banking and finance, which was corporate
55:03
for 10 years, and I was the only person within those
55:07
organizations that I knew of. And then I worked for nonprofits
55:11
that focus on blindness, so those organizations were very
55:18
predisposed to providing accommodations and supports, and
55:21
still, I ran into some challenges. But now that I have
55:28
my own business, I have a great sense of freedom of how I use my
55:35
time, how I decide what to work on and what not to work on, who
55:40
I decide to do projects with who I decide not to so I think it's,
55:47
I think it can be a beautiful
55:50
thing. How can we promote entrepreneurship as a strong
55:55
alternative to workplace? Employment? Me, I as an
55:59
entrepreneur, have been since year 2000 I am for
56:03
entrepreneurship, and I agree with a lot of what you said. How
56:07
can we go about promoting entrepreneurship to our
56:14
community?
56:16
Well, one thing I have come to believe is, rather than creating
56:22
anything new that's disability specific, a more effective
56:26
strategy is to find programs that are already working and
56:32
work with them to become more inclusive of people with
56:34
disabilities. So there's quite a few programs, apprenticeship
56:38
programs, business development programs that have special folks
56:46
focus on bringing in underrepresented populations.
56:49
They usually have started with race and gender or geographic
56:53
location. People live in rural areas, people live in urban
56:58
areas, whatever it happens. But there are successful, proven
57:02
programs out there, entrepreneurship centers,
57:06
entrepreneurship programs here in the US, the Small Business
57:10
Administration, apprenticeship programs. And my strategy is to
57:14
find those winners that are already doing great work, that
57:18
have proven track records, that have not as most of them, have
57:24
not put time, effort, resource, into being disability inclusive,
57:28
and have those conversations. If you have this great program,
57:31
it's a wonderful track record. Can we have a conversation about
57:36
how I can help you be inclusive of people who are blind in your
57:41
program as a for instance. So I both, I mean, they the internet
57:49
search engine is a beautiful thing. So I would, if you're
57:52
interested in entrepreneurship, I would find an entrepreneurship
57:55
program
57:57
that either is in your area,
58:00
physically, or serve you virtually, and I would, I would
58:06
connect with the programs that are already out there. Say, Hey,
58:09
I just read about your organization. Super excited. I
58:16
want, want to explore getting involved. I am blind, I use
58:21
screen reading software, or I'm a wheelchair user, or deaf, I
58:28
use sign language interpreters, or whatever it happens to be.
58:32
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
58:45
question before I let you go and this is it's this, what are some
58:50
of the more pivotal moments that you could think of while you
58:54
were working for the lighthouse in Seattle that has helped to
58:57
influence influence your leadership? I Oh,
59:04
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
59:33
expected her to live with them The rest of her life. Yeah, they
59:41
went to a local chapter meeting of an American Council, the
59:46
blind chapter. There were some people there who worked at the
59:50
lighthouse. They talked to her and her parents and said, you
59:58
know, there's a there's a job for her. She she can come and
1:00:02
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
1:00:15
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
1:00:27
through gun violence, early 20s, criminal, criminal situation,
1:00:34
incarcerated, again. Just thought, you know, would never
1:00:42
be able to amount to anything in life, aerospace machinists,
1:00:48
married kids, house so no, not just the financial rewards of
1:00:55
work, but just the dignity of work. This the identification
1:01:01
that comes with that in our society, there's such a strong,
1:01:03
positive self identification that comes with with being
1:01:08
employed or earning your own way, being contributing person.
1:01:12
So just, just those firsthand and I, you know, whenever I
1:01:17
thought I was having a difficult, challenging day with
1:01:20
whatever budgets or board meetings or whatever, I would
1:01:24
just go to the lunchroom when people were taking a break from
1:01:28
work out on the machine shop floor or the manufacturing
1:01:32
floor, and just sit with people. I'd say that's that's the main
1:01:37
thing.
1:01:40
Dr Curtis, any final thoughts for me, as you know, overall,
1:01:47
what thoughts would you share with regard to, how can one
1:01:51
remain positive? What can they do to to, you know, be a part of
1:01:58
society and not become one who thinks, Well, I'm just a drag on
1:02:03
society. I am just a gift, not a gift, but a token of society.
1:02:08
What? What are your final thoughts? What sort of advice
1:02:13
would you share with others? Uh,
1:02:17
join. Join something. Some people love to be parts of big
1:02:21
organization. Some people like to just have a couple friends,
1:02:24
but don't, don't, unless you're a hermit, you're interdependent
1:02:31
on other people. Anyway, yeah, we all depend on one another. We
1:02:36
all provide different things for each other. So make, make, make
1:02:41
connections.
1:02:44
And if your thing is playing
1:02:47
role playing games, find some other blind people play role
1:02:52
playing games. Your thing is coin collecting, people who do
1:02:57
point collecting, if your thing is animals, find some people who
1:03:01
also are passionate about welfare of animals, so it
1:03:05
doesn't have to be formal, it doesn't have to be big. It could
1:03:10
be your neighborhood. It could be your church or your synagogue
1:03:13
or your place of worship or the local clean up the park day or
1:03:18
whatever, whatever can motivate you to connect.
1:03:26
Dr Cook, it was a pleasure and a privilege interviewing you over
1:03:30
the last hour. I really appreciate it. I want to thank
1:03:32
Aaron for having brought us together.
1:03:35
Yeah, all the time flew by. Yeah, that's when you know
1:03:37
you're having a good time.
1:03:39
I did have a good time. Yeah, I had a lot of fun. And if you
1:03:43
ever wanted an interview from me again, I would be more than
1:03:46
happy to interview
1:03:48
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.
1:03:55
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.
1:04:00
Now, thank you. Bye, bye, bye.
1:04:06
Donna wants to hear from you and invites you to write to her. At
1:04:09
Donna jarred hand@gmail.com
1:04:13
Until next time you.