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Ep. 20: Redefining Disability in Psychology · Wellness in Today's World

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Welcome to "Wellness in Today's World," a space where we discuss
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the latest insights in psychology,
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wellness, and everything in between.
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Hello, I'm Debra Kawahara. Thank you for joining us today.
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Today's guest is someone who has not only shaped the field of psychology,
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but reshaped how we think about disability,
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identity, and inclusion. Dr.
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Rhoda Olkin.
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is a clinical psychologist, professor,
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author, and trailblazer whose work has illuminated the lived experiences
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of people with disabilities in ways that are both deeply personal
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and profoundly transformative.
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Dr. Olkin, it is an honor to have you here today.
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Let's begin with your story and how you kind of found your path
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to psychology and how your own experience with disability shaped your career.
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Thank you, Debra. So I had polio when I was one,
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⁓ about a year before the vaccine became available.
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Yes, I'm that old. And so I have no pre-disability,
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post-disability. I just have me and my identity as a disabled person.
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And my disability has changed,
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of course, as I've aged.
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I used to wear a brace, then I went to no brace but crutches,
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and now I'm a wheelchair user.
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And I went to psychology pretty early on,
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I would say during high school.
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And my goal originally was to change the world,
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and I realized that was a little large,
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and then it was to change psychology,
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and that was still a little big.
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And so I really have concentrated on
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who are the students I'm training to be clinical psychologists?
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And what can I put out there ⁓ in my books that can help clinical psychology,
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counseling psychology, other kinds of therapists,
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work with clients with disabilities?
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Given that we're about 20% of the population,
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I really wanted to infuse more disability into clinical training.
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So really a call to the profession to help students ⁓
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Absolutely.
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and those working in mental health be better,
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competent in working with people with disabilities.
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Yes.
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⁓ Was there any pivotal moment or mentor that helped you form,
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I guess, your voice around these issues and be able to advocate in the
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way that you have been able to?
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I think there was ⁓ many pivotal moments but one stands out
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to me. Because at first I didn't want to be the psychologist who just
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did disability things. And at some point I realized if I don't do this,
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there are a lot of people who will never know about these things,
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and who else is going to do this?
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⁓ And because I'm an insider,
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I wanted an insider to do it.
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As it happens, there are three people who also had polio who were very,
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very visible in disability issues.
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One was Judy Heumann, and she became the director of NIDR,
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the National Institute on Disability Research,
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and Paul Longmore, who was a historian at San Francisco State.
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And then Ed Roberts, who was the first person at UC Berkeley with severe
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disabilities, who was first housed in a hospital,
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and then he sued to be in a dorm along with other students,
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and became the head of the Department of Rehab.
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So I watched these contemporaries of mine go to important positions.
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And I went to a conference of the Society of Disability Studies and
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I met Paul Longmore, the one from San Francisco State.
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And he was just so out there, such an advocate and
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so welcoming of me that I thought,
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"Oh, I want to do what he's doing.
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He's affecting students. He's writing.
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Let me see what I can do." And that led me towards the idea that maybe I
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had a book in me, that it wasn't just gas or indigestion,
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that maybe it really was a book.
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And then Alliant very nicely gave me a sabbatical so I could explore that.
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Ha
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And I think putting it down on paper opened me as well
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as told me I have something to say as an insider in disability.
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Wow, wow. So it was really those experiences informing your
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work and wanting to share from those experiences
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into professional work.
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Yes, the marriage of the personal and the professional.
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Yeah, for sure. And it just seems like because your path connected
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you with people that were doing the kind of work that you wanted to do,
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it allowed you then to say, "Hey,
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I want to do that as well."
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Yes.
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So the role modeling and mentoring that you got from your contemporaries.
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Yes, which I think we know is what most minoritized people need,
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is some kind of mentor within their own group.
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So, you know, you had the support,
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but I also am going to ask you about
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any challenges or tribulations that you had to go through
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as a psychologist in training with a disability,
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because I know you're still even a strong voice in terms of what needs to be done.
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Yeah, you know, and you talk about it like it's the past tense,
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but it's not the past tense. There are still very much trials and tribulations.
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Yeah.
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I think a big one is that some supervisors kept insisting that it was going
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to be a problem for my clients.
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And when they said questions like,
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Mmm.
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how do you talk about this with your clients or tell me how it comes
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up for your clients?
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If I say it really isn't an issue,
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it makes it sound like I'm in denial.
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And there's sort of no way out of that conversation without sounding defensive.
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The truth is what I have found in my clinical work is clients make
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Yeah.
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an assumption about me that is actually really helpful.
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They look at me and they think,
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"Oh, she has suffered. She is going to understand my suffering." And it sort of
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helps that therapeutic alliance and they think I'm going to understand them.
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It is supervisors who have always insisted that it was a problem.
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The other problem was that I came up before there were laws protecting me.
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Hmm.
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So starting from undergraduate,
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I trained the University of Oregon.
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I then trained Stanford University.
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And then I went to graduate school at UC Santa Barbara and I had to train them.
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And then I had my first job at Sacramento State and I started from scratch.
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Hmm.
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So when I came to Alliant, I was tired of training universities.
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Mm-hmm.
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And yet there was no curb cut where faculty parked.
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There was a curb cut where students parked.
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The assumption being that students have disabilities,
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professors don't. There was a two-story building with no elevator.
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Mm.
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It was a favor for people to bring me my mail from the second floor.
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Hmm.
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So every year I took one issue to fight.
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Obviously the elevator was the big one.
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Then it was a curb cut, then it was a parking spot,
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then it was an automatic door opener.
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Then it was a door opener to the bathroom.
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And then we moved to San Francisco,
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the campus moved. And I met the president of the university in the elevator.
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And I said to him, "I'm not coming back until you figure out where
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I'm going to park." ⁓ It has been an ongoing issue ⁓ everywhere.
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And one of the curious things about disability:
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when I enter a room in my wheelchair,
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I am
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highly visible. There's another way in which disability is invisible,
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Mm-hmm.
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which is that if I'm not in the room,
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⁓ no one's thinking about it.
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I've been at Alliant for 35 years.
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Still, when I go into a meeting,
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nobody's pulled out a chair so there's a place for me to go into the table.
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It's as if until I'm there, nobody thinks,
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"What is the access into this room?" It's small things like that.
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⁓ Those are the ⁓ biggest work challenges,
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Mm-hmm.
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which is that it feels like it's a constant uphill battle.
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And I don't mean to just point to Alliant.
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I think that we will find that if I talk to other people with disabilities,
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they will all say the same thing.
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The other...
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big challenge, and I think again it's true for anyone with
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a disability that's visible to other people,
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is there's a kind of loss of boundaries;
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such that people feel free to ask me questions and say things to me.
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So one of the things that happens really often is people want me
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to know how comfortable they are with my disability.
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And they do that by making a joke that everyone else has made,
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like,
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"Don't run me over!" or, "You're going to get a speeding ticket!" or "Gee,
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I wish I had one of those." ⁓ Things like that. So strangers comment
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Hmm.
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on me a lot, and there's a kind of loss of boundaries. The only other group that
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I know that experiences that are highly visibly pregnant women,
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where people ask you, "What do you want?" and
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Mm.
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"When are you due?" and other kinds of personal questions.
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So I find I get personal questions just out and about going into the public venue.
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Then, of course, I do want to say it is not easy being disabled.
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⁓ There are a lot of things that often come with it.
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I experience pain ⁓ most profoundly.
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I experience fatigue. Disability fatigue is not like,
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"Oh, I need a good night's sleep." It's more like if I've left something
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in the kitchen, it's going to stay there because I can't go get it.
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Mm.
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That kind of fatigue where a decision
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to maybe go to something, a dinner on a Friday night means I better
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not be doing much on Saturday.
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Constantly making decisions to do A means not doing B.
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You know, as you were talking,
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what it made me think about ⁓ is the extra energy that it takes
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to navigate the world ⁓ and how the world isn't set up so that you're able
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to navigate it. It's a privilege for people who are able that ⁓
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create barriers and obstacles for you that take extra energy to then actually have
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to navigate in your daily life.
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You're
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absolutely right. And in fact,
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I did a study of Alliant students across the different campuses and asked,
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"How does your disability affect you?" And 75% of them said cognitive fatigue.
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Even when their disability isn't one that causes physical fatigue,
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that "extra"—calling everywhere before you go to make sure it's accessible
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and ⁓ monitoring your own symptoms—and all of this leads to cognitive
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fatigue.
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So, you know, you have ⁓ now talked about some of the attitudes,
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some of the barriers, ⁓ and you've written and spoken extensively about
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the intersection of disability and psychotherapy.
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What do you wish ⁓ every therapist
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understood about working with clients with disabilities?
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I think there's a few things. One is that disability isn't the only thing that
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defines me. I have intersectional identities.
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I'm also female. I'm also a certain age.
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I'm also Jewish. There are other things.
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And not letting disability so overwhelm the therapist that they
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see nothing but that, that we really have to ask all those other questions about
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other identities.
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The other thing I wish ⁓ is about that invisibility,
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that the things I have to deal with as a person with a disability are going
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to be mostly hidden to the therapist.
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And the therapist isn't automatically going to know about those.
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And so there needs to be further questioning.
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And that's why I developed disability-affirmative therapy.
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What are those questions
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that you need to ask to truly understand the role of disability
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in someone's life? So that you're not overinflating it,
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but you're not also underestimating it.
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And if I had one wish for therapists,
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it would be that they become allies. That people with disabilities are tired
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⁓ and we need more allies in the field ⁓ of clinical counseling
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and mental health. ⁓ And
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if they could find other ways in their various roles to be a disability ally,
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it's very helpful.
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So I know a lot of people oftentimes have gone into the field because we
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do want to be of help to people.
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What would it look like for someone to be a disability ally?
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What could they practically do,
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I guess, as an ally?
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Well, one is very simple: Are you wheelchair accessible in your office?
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Could you please put that on your website?
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What that shows is some amount of disability awareness.
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Just like we might ask somebody,
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"What are your pronouns?" And it shows that we have some awareness that some people
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don't use binary pronouns. Just saying if you're wheelchair accessible would
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be helpful and would save clients a phone call.
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Training your staff on how to interact with a new client with disability;
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being aware of disability issues before someone brings them to your awareness,
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Mm.
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thinking about them in the different roles,
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⁓ not assuming that your supervisees with disabilities cannot
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be therapists or are going to have
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a lot of issues with their clients around their disability.
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These are all different ways in each person's venue that they can be allies.
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In terms of organizations ⁓ and being allies,
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what could organizations do in terms of their own perspective
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and actions in this arena?
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Well, the first thing is to realize that for every employee who identifies
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as a person with disabilities and asks for an accommodation,
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there are two employees who have not.
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All the literature on disclosure in the workplace suggests that this
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is still the case very much. And in professions like medicine,
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law, mental health, it's probably even a slightly worse ratio,
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because people who want to be seen as professionals in these fields,
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there is a lot about those fields that tells them that they're the consumer,
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not the provider.
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And so we have to assume that there are many,
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many people who have not disclosed disabilities,
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which means that as employers or as workplaces,
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we need to infuse universal design as much as possible,
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not only into the building and the physical locale,
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but into our policies and procedures.
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And then I guess I'm wondering at the societal level,
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what would be ways that we could address these disparities?
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Well, as you know, I started out trying to change the world.
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That's why I'm asking! I would think you'd have some thoughts about it.
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That's why I'm asking. I would think you'd have some thoughts about it.
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Really, disability has to be incorporated in every single thing we do;
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in every plan, in every building,
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in every policy. We have to think,
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is there going to be a differential impact on people with disabilities?
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How can we incorporate universal design?
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There are many structures that seem antithetical
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to disability-affirmative practices.
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If, for example, you have a child with a disability,
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there are at least eight different systems that you're going to have to access.
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And not only are they not coordinated,
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they seem to be counter to each other.
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And the funding
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for disability is very, very poor.
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One small example, has Alliant University put aside 1%
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of its budget for disability accommodation?
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It has a budget for the students.
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It doesn't have a budget for the faculty or the staff,
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which means if you ask for something that's costly,
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any employer is not going want to do that because they haven't budgeted for it.
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That's the kind of thing where I talk...
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what I mean by invisibility, which is,
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Mm-hmm.
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~ "Oh, it's a surprise! We need some money for an accommodation."
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So better funding, much more coordination across agencies,
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more actual help for both parents with disabilities and parents of children
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with disabilities, and more agency for consumers.
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And I'll give an example of what I mean by agency.
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When I first needed a wheelchair,
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I couldn't go to a store, try out 20 wheelchairs and figure out which I wanted.
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I first went to my primary care physician,
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said I need a wheelchair. She wrote up a prescription;
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that sent me to an occupational therapist.
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The occupational therapist decided what were the features I needed
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in a wheelchair. She then wrote the prescription and because of
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who my insurance was, sent it to the one place that took my insurance.
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That one place had only three different kinds of wheelchairs; and because
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I'm five feet, only one of them met my needs and that was the wheelchair I got.
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And then I paid more to get a more comfortable seat because,
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oh my, why would I need a comfortable seat?
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So that wasn't part of what insurance would pay for.
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So in that process, I don't have agency at all over something that's going
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Mm-hmm.
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to become a part of my body.
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So really limiting you in terms of your choices,
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in terms of options, and even what is covered under your insurance.
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Exactly. That just, again, makes it that much harder to be able to
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Exactly.
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do your daily life.
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Exactly,
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and that somebody who hasn't done this would never know about.
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I know we try to talk about privilege and that is
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the privilege of people that are able-bodied,
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right? you don't have to think about this.
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You don't have to deal with the barriers and obstacles,
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nor do you have to think about them.
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So I'm going to have you kind of think about you having a magic wand.
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And we're going to do a little bit of dreaming of
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you designing the world so it is more inclusive,
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you know, and what would that look like,
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physically, socially and psychologically?
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So most of the funding for disability issues goes towards prevention
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of disabilities and cure for current disabilities.
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And some of that is very important.
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But one of the sayings in the disability community is "care,
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not cure." There's not as much funding for those who have disabilities.
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Hmm.
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And we are never, ever going to eradicate disability.
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It has been throughout time and always will be.
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It is a part of humanity. So we need to think about how do we build
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a world that accommodates disability?
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How do we do better care for those who already have disabilities?
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And so I would reprioritize some of the funding towards care.
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So an example is...
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Mm.
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you have a baby and because of your disability,
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you cannot lift the baby. And we all know that,
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you know, early childhood, it's all about lifting the baby into something,
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out of something, into the car,
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out of the car, et cetera. And you have a personal assistant.
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Mm-hmm.
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The personal assistant that the state has paid for is not allowed to
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do anything for the baby other than pick it up and bring it to you.
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It cannot feed the baby. It cannot
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change the diaper of the baby.
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It cannot do any baby care. So the baby is going to be taken away.
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Why can't we fund somebody that helps for those early childhood years,
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after which you can be a perfectly fine parent?
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Why are we not funding more help for the mother of a baby that's born with
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a disability to help her coordinate the different services that she's going
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to have to access? When that child starts school,
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we're going to call the needs of that child "special." "The child
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has special needs." And we're creating
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a mindset where the needs of people with disabilities are "special";
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not routine, not everyday.
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And I would want with my magic wand to change the mindset to say,
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"How are we going to accommodate 20% of our population?
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What can we do? How can we infuse universal design everywhere?"
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It is not "special," it is routine.
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Yeah, and as you were talking,
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even that word "special" means it's extra;
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it's outside normal or ordinary.
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And so it sets up already this expectation,
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like we're having to do something additional...
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For YOU. Exactly.
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For YOU. Yes.
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You have been a trailblazer for sure,
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particularly in psychology. I know this has been an area that
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you have been dedicated to
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and have been working on to get the field informed.
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So what would you want your legacy to be?
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Big question.
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[Laughing] ~
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I
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have a couple of thoughts about that.
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There's a field called disability studies.
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It started in Leeds, England.
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In disability studies, it's very interdisciplinary.
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It's got anthropology and philosophy and social psychology
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and everything except clinical psychology.
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I would hope
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that I have helped to infuse disability studies into clinical work.
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In our San Francisco campus, we have graduated over 100 different students with
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disabilities. And so I hope that part of my legacy is that each of those goes
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out as a professional with a disability and starts to change the face of psychology.
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And the third thing is, if I can be so bold,
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are my books. And each of them tried to address a slightly different audience.
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So the first book, "What Psychotherapists Should Know About Disability,"
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was trying to say, here I am an outsider,
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yet I'm also a psychologist. Let me tell you from that insider perspective what it's
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like, what you need to know about disability.
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And then the second book, "Disability-Affirmative Therapy,"
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was really for clinicians. It's a much more clinical book.
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Here's how you work with someone with a disability.
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And the third book, "Teaching Disability," that was for all of those people
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who have to teach diversity courses and have no idea what to do when
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it comes to disability. And I wrote 36 different activities that you could
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do with students to try to help teach them from an insider perspective
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Hmm.
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about disability. So it might change how they think about disability.
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And the one that's coming out now from APA is a guide
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to building a disability-affirmative practice.
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And that's the nuts and bolts.
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How do I start? What does it mean to have an accessible office?
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Hmm.
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How do I think about intersectionality?
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I'd like to. ~
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What's the intersection of age and disability?
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How do I think about the beginning of clinical work?
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What are the simple steps I can do in my own practice?
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What about if I'm a supervisor?
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What about if I'm an instructor?
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Because we know most clinicians don't read the professional literature.
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They don't have time. So I actually wrote the book in such a way that
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you can pick it up and go to the one chapter you need
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and not have to go from beginning to end.
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Of course, I want people to read from beginning to end,
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but I really wrote it with that in mind,
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which is you're not going to become expert,
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you're not going to have competence,
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but I want to help you have cultural humility when it comes to disability.
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Mm.
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And that was the design of that book.
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So making it user-friendly and also knowing how busy professionals are;
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being practical in terms of that.
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What gives you hope
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right now in terms of the disability rights movement
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and mental health?
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My hope is that we are turning out more professionals with disabilities.
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And I see them. I see how they have energy.
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I see that they grew up after laws were passed and they've come to take their rights
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Mm.
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for granted. And when they don't have them,
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they're more upset and mad and energized.
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And that's great. I feel really happy about the number of students that we've
27:10
graduated with disabilities.
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Hmm.
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So they are younger, they have new energy,
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they are starting to infuse the field.
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That gives me a lot of hope. They are writing about it in professional ways that
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was simply non-existent when I was coming of age in the field.
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So it's already starting to change.
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And I am proud of all the students that we've graduated who then many
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of them went into certain disability work
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and are starting to change the face of the profession.
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That's what gives me hope.
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Wonderful. I mean, all your work and your mentoring
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of students kind of is that investment,
27:52
which then will impact, you know,
27:56
the accumulation of all these different people and professionals will then slowly...
28:03
the accumulation of all their impact will make change.
28:06
And that sounds like that's a part of your hope.
28:10
All right, so last question: What would you want some
28:15
key takeaways for the audience today?
28:18
I know we didn't even tap all of your expertise in this short time,
28:24
but what would be key takeaways that would be critical?
28:29
One is that "disability" is not a dirty word.
28:32
There's a movement within the disability community to say
28:32
Mm.
28:36
not "person with disability," but "disabled people." Just like we wouldn't
28:40
Okay.
28:41
say "a man who has gayness," we'd say "a gay male." That I'm a disabled person.
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It's not a dirty word. That I am not a tragedy.
28:50
That disability is hard.
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It's partly hard because the world makes it hard,
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but it's also hard to be disabled.
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But I am not a tragedy and people with disabilities are not a tragedy.
29:02
Third, and this is something that psychology has really promulgated,
29:07
which is that I don't have to go through the five stages of grief in order
29:12
to adjust to disability. I don't have an adjustment to disability.
29:16
I have a response to disability.
29:18
And that response changes
29:20
all the time as I age, as I'm in different venues.
29:25
And so let's not think anymore about stages of mourning and grief,
29:30
but rather what is your response to the disability at any given time?
29:35
And then lastly, it will always be here.
29:38
Let's get used to it.
29:40
Right. I mean, I really take that to heart and will remember that.
29:46
Dr. Olkin, thank you so much for sharing your wisdom,
29:50
your lived experience, and your unwavering commitment to making
29:54
the world more inclusive. Your insights today have not only deepened
29:58
our understanding of disability,
30:00
but reminded us that empathy without action is incomplete.
30:06
And I'm going to say to everyone listening,
30:08
let's carry Dr. Olkin's message forward,
30:11
that disability is not a dirty word nor a deficit,
30:16
but a dimension of human diversity.
30:19
And it deserves respect, representation,
30:23
and radical inclusion. So with that,
30:26
we will end today's episode. Until next time,
30:30
remember: Wellness
30:31
is a journey, not a destination.
30:34
Please take care and we'll see you next time.