When Blindness isn't Loss with Karen Rose LMFT
Using the attached podcast interview transcript, write a very brief, conversational topic introduction for this podcast episode from Matthew's perspective. Keep it to one paragraph that introduces the guest and gives a quick overview of what makes their story interesting, without going into detailed summary. Do not offer reflections on what Matthew finds the most interesting, as this will be covered elsewhere. The tone should be warm and personal.
Reframing Expectations: Lessons from a Lifelong Advocate
In my recent conversation with Karen Rose, I was struck by how someone who has never experienced vision loss can offer such powerful insights about living with blindness. Karen, a 73-year-old licensed psychotherapist and career coach, was born totally blind due to retinopathy of prematurity. Her perspective challenges many of the assumptions we make about disability and loss.
Wholeness, Not Loss
Karen's opening analogy stayed with me: she compared wanting her sight back to wanting her penis back—both are wonderful on someone else, but neither belongs to her. This isn't about rejecting medical interventions or dismissing others' experiences of loss. Rather, it's about recognizing that she is complete as she is. "I am a whole blind person, not a person missing sight," she told me.
This distinction matters because it shapes how we approach challenges. When I work with clients who have experienced vision loss, many struggle with grief and adjustment. Karen's perspective doesn't invalidate that experience—she readily acknowledges that losing hearing would be a significant transition for her. But for those born with blindness or other disabilities, the framework of loss might not fit.
Technology as Liberation
Karen made a striking claim: "With the advent of the computer, the iPhone, Uber, Lyft, Instacart, and DoorDash, sight is no longer needed in the world, period. Full stop." While this might sound like hyperbole, her point is worth considering. She can navigate, shop, work, and manage her daily life with greater independence than ever before.
When she felt guilty about her Uber and Lyft expenses, she calculated what car ownership would cost a sighted therapist—between $1,000 and $1,200 monthly for payments, insurance, parking, gas, and tolls. That became her transportation budget. This kind of reframing exemplifies the creative problem-solving she's developed over decades.
From Accidental Activist to Career Builder
Perhaps the most remarkable part of our conversation was Karen's account of accidentally stumbling into the 1977 Section 504 sit-in. Walking past what she thought was just a crowd, she discovered a historic disability rights demonstration and ended up spending three and a half weeks occupying a federal building. This action ultimately forced the government to implement the first civil rights protections for people with disabilities.
Karen's career journey illustrates both the barriers and possibilities that exist. Despite extensive education and qualifications, she faced years of rejection and illegal interview questions. One supervisor told her a blind person couldn't be a therapist. Her response? She started her own practice, lost money for nine years, and eventually built a thriving career working with clients from all backgrounds—not just people with disabilities.
The Power of Reframing Questions
The most practical advice Karen offered was about changing our fundamental questions. Instead of asking "Can I do this?"—which often leads to a dead end—she suggests asking "How am I going to get this done?" This shift opens up possibilities: hiring help, using technology, finding alternative approaches, or connecting with others who've solved similar problems.
This isn't about denying real limitations or pretending everything is possible. It's about approaching problems with creativity rather than resignation. Karen's anger at systemic barriers became fuel for persistence. Not everyone needs to be "a hard ass bitch," as she described herself, but everyone can benefit from refusing to internalize others' low expectations.
Challenging the Inspiration Narrative
Karen pushes back against being seen as inspirational for simply living her life. "I never studied being inspirational. I only studied being a therapist," she pointed out. The expectation that people with disabilities should inspire others by existing can be its own form of limitation—it reduces complex individuals to symbols rather than seeing them as complete people with varied interests, strengths, and contributions.
Beyond the Disability Ghetto
One theme that emerged repeatedly was Karen's refusal to be confined to disability-specific roles. When people suggested she'd have an easier time as a vocational rehabilitation counselor or that she should work primarily with blind clients, she resisted. She wanted to work with everyone, and now only about 2-3% of her clients have disabilities at all.
This choice reflects a broader principle: we get to define how our identities serve us. Disability can be part of advocacy and community building, but it doesn't have to define every aspect of our professional or personal lives.
Living with Post-Traumatic Growth
Karen works best with clients who are ready for what she calls "post-traumatic growth"—people who have processed their initial grief and trauma and are ready to build something new. Her approach isn't right for everyone, particularly those still working through significant loss, but for people ready to move forward, her perspective can be transformative.
Lessons for All of Us
Whether you're navigating vision loss, another disability, or simply facing significant life challenges, Karen's story offers several key insights:
Reframe problems as puzzles to solve rather than barriers to accept
Question whose expectations you're living up to and whether they serve you
Use technology and support systems strategically rather than seeing them as failures
Define your own relationship with identity and community
Channel frustration and anger into productive action when possible
Karen's willingness to share her problem-solving expertise—even offering to help people work through challenges for free—reflects a generosity that extends beyond her professional practice. Her story reminds us that the biggest barriers we face are often not the practical ones, but the expectations and assumptions that limit our vision of what's possible.
Listen to the full conversation with Karen Rose on the Insight Out podcast to hear more about her journey from accidental activist to successful entrepreneur, and her practical advice for reframing the challenges we all face.
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Licensed psychotherapist and career coach Karen Rose (LMFT LPCC), who was born totally blind, shares her perspective on living as a whole person rather than someone missing something, and how she built a thriving practice despite facing significant employment barriers. At 73, Karen continues working six and a half days a week, using the creative problem-solving skills she developed navigating a world not designed for her to help others think outside the box in their careers and lives. She recounts accidentally stumbling into the historic 1977 Section 504 sit-in that secured the first civil rights protections for people with disabilities, and discusses how technology has transformed independence for blind individuals. Karen challenges the notion of lowered expectations and advocates for shifting from asking "Can I do this?" to "How am I going to get this done?" She also shares her journey through decades of advocacy work, the realities of building a private practice, and her approach to helping clients achieve post-traumatic growth.
Topics covered: blindness from birth, retinopathy of prematurity, disability rights advocacy, Section 504 sit-in, career coaching, psychotherapy practice, lowered expectations, problem-solving strategies, assistive technology, employment barriers, post-traumatic growth, disability identity, civil rights history.
Karen can be reached at karenrosemft@rose-counseling.com and at her website www.career-therapy.net.
ABOUT THE PODCAST
inSight Out is your podcast home for living well with vision loss. Host Matthew Reeves (LPC CRC NCC) is a legally-blind psychotherapist and rehabilitation counselor specializing in helping people thrive while living with disability. Matthew is licensed in Georgia and is a nationally certified rehabilitation counselor.
Please be sure to subscribe to catch every episode. And remember to share the show with others in the blind and low-vision community!
CONNECT WITH US
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©Integral Mental Health Services, LLC
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The following transcript is AI generated and likely contains errors.
COLD OPEN
[00:00:00]
Karen Rose: what is it that I would do if I didn't have a disability? If I could see 20/20 again, what would I be doing? Now, what is it that I would love about doing that? What would I love about being an airline pilot, truck driver? What would I love about the thing that I think I can't do? Now,
how do I do that anyway? I love to travel. Would I like to be a travel agent? If I can't be a pilot, I love to help people. Who do I wanna help and how do I wanna help them?
INTRO
Matthew Reeves: You're listening to [00:01:00] Insight Out a podcast about living well with low vision. Maybe you're feeling confused, scared, isolated, or disheartened about a recent vision loss diagnosis, or maybe you've been managing your vision loss for a while and now you want to hear from others about how to continue growing and thriving. Insight Out is your supportive space to find healthy and impactful tools to build and maintain a truly rich and gratifying life with low or no vision.
I'm Matthew Reeves. I'm a legally blind psychotherapist and rehabilitation counselor. I specialize in helping people adjust to disability through my practice, integral Mental Health Services in Atlanta, Georgia. I'm really glad you're listening.
Please subscribe so you don't miss an episode, and let others in the low vision community know about the podcast so the word can spread to those who might find it helpful. And now on with today's discussion.
TOPIC INTRO
Alex: this is placeholder for generic [00:02:00] voiceover.
INTERVIEW
Matthew Reeves: karen, thank you for joining me today. Um, your history and, and time in the disability community is, is, uh, surprising and, uh, invaluable, uh, as a perspective for this audience. So I'm really grateful for you being here. Would you mind, uh, just jumping in and introducing yourself and we can take it from there.
Karen Rose: Okay. My name is Karen Rose. I'm a licensed psychotherapist in California and a career coach throughout the country and internationally. That is if people want to contact me from wherever. As long as I'm not doing therapy, I'm good. Outside of California, I was born totally blind, so I've never lost anything.
People have said, don't you want your site back? And I've said. No more than I want my penis back. A penis is wonderful on someone else. I can borrow one for joy, but it's not [00:03:00] mine. It belongs to someone else. I am a whole blind person, not a person. Missing sight.
Matthew Reeves: Do you find that that perspective is hard for people to understand?
Karen Rose: Absolutely. Um, the idea of being whole as I am and not someone missing something may be unfathomable to some people. It does not change who I am as a whole person.
Matthew Reeves: Right.
Karen Rose: I lucked out in a family where at least most of it saw me as a whole person growing up and saw me as someone who did things differently, but not someone who was incomplete.
You're not incomplete by being who you are. You're completely who you
are. And I am too.
Matthew Reeves: I love that perspective. One of the, one of the questions I have when I [00:04:00] hear you talk about that, you know, it is a different, people have different opinions on terminology and language. And one of the words that people have strong and sometimes very different opinions on is the word disability.
'cause it has that dis at the beginning. Like there is, it's, it's, it's focusing on what one cannot do. Um, what are your thoughts on that language and that word?
Karen Rose: Um, I've always used same language anyone wants. So if they wanna call me disabled and we wanna talk about a disabled community, I'm happy to be part of the community.
Um, if people wanna talk about me as the blind girl, I'm the blind girl. Um, I have a little trouble with differently abled because I think that. While that reflects the resilience and problem solving abilities that I've developed as a result of being blind, it strikes me as a [00:05:00] little too convoluted.
Matthew Reeves: Hmm.
Karen Rose: Uh, although I do think that being born blind has put me into a position to develop both resilience and problem solving abilities. The ability to think outside the box is now what I do for a living for other people. Hmm. So if I'm walking, an example I use all the time. If I'm walking down the street and there's a pile of construction and my cane goes under it because it's supposed to have a solid barrier, but doesn't, and there's a print sign that says, oh, you're supposed to cross the street and go around the construction, but it's not braille.
It's not in any form. I know the. Construction ramp is going out into the street, light better. Damn quick, quick figure out what to do next on the spot because there might not be anyone there. I might use Ira, a remote [00:06:00] sided assistant. I might just use my cane and go out into the street and see what the thing is trying to tell me to do.
But I've gotta figure it out and right now because I'm not gonna stand there and wait two hours for someone else to show up.
Matthew Reeves: So part of your resilience is just rapid problem solving and and pivoting on the spur of the moment. And it has to be, and then it
Karen Rose: is really useful in thinking outside the box, which is now what I do for a living, especially on the career coach side of figuring out, okay, so you've done it this way and now what is it about that that you like that you can pick up and do?
Another way or in another context or in another field. Right. And most of the time, my favorite part of the day on the coaching side is when someone says, oh wow, I never thought about that.
Matthew Reeves: You never, yeah. So you're helping them see [00:07:00] perspectives they've never seen before.
Karen Rose: And that comes from being blind and having to do that in a world not made for me from age, birth,
Matthew Reeves: from the very beginning.
Wow. Well, let's start from the very beginning. So that was a great segue. What, what is your story of of blindness?
Karen Rose: I'm retinopathy prematurity. So I'm one of the kids that was born between 1948 and 1954. Yes, I'm aging myself. Um, and uh, everybody says, when are you gonna retire? You're 73. And I'm like, um, when I'm dead.
That's a great time. During time. Um, so. At that time. So I was born at two pounds, one ounce and at that time, little kids. Now I can't lose two pounds, one ounce. But
anyway,
at that time, kids that were that little were put into incubators. But they said, the doctors said to [00:08:00] my parents, well, we don't know how much oxygen to give these kids in the incubators, so your kid may be blind if we give too much.
Your kid may have cerebral palsy if we give too little and we don't know how much to give. Do you want this kid to live? Well, my family's Jewish. "To life, to life, l'chaim! l'chaim! l'chaim! To life!" Rse, right? My mother coming out of anesthesia wasn't given a choice, and my father, who had just come back from World War ii.
Said, of course I want my wife to live, and if possible, I want my kid to live blind cerebral palsy or anything else. And so I lucked out. I get to be here.
Matthew Reeves: Wow. I
Karen Rose: know someone who was born in another country and her parents were [00:09:00] not given a choice. She was left out of the incubator for 24 hours, and when she happened to survive, they put her in.
Matthew Reeves: So you got you the, the choice was made for you, but it's a choice you're happy about and so I Oh, I'm
Karen Rose: happy to be here.
Matthew Reeves: Yeah. Yeah. So you, you mentioned earlier something you, you told me, uh, before the recording as well, that you, that so often in this community. I mean, I think I looked it up, you probably know the statistics better than I do.
I think something like 10 to 15% of people who identify as having a vision impairment or blindness are totally blind. It's a relatively small minority of the population. Yeah. It's a very
Karen Rose: small minority.
Matthew Reeves: Right. And and you said vision loss is a concept that you don't relate to 'cause you've never lost anything.
How does that change the perspective? 'cause I'm sure you've heard many conversations from people who have experiences like mine where it is a loss. Uh, what's different about it for you? Very much
Karen Rose: so. And I imagine, what would it be like for example, to lose my [00:10:00] hearing and have to learn American sign language quickly?
And have to, as a deaf line therapist, I know, work completely in Braille and online. And that would be a big loss and a big transition, but I would continue to work as a therapist. I would learn American Sign, I would learn American Sign the way blind people do, um, in their hands, right? Um, I would lose the chance to listen to music, which I don't do very much of anyway.
Um, I, I would, would have to figure it out and I would have to figure it out damn quick,
right? Because I have a lifestyle that requires a boatload of money and so Right. Can't stop. There's no stopping of. Okay, so now I can't work for two years while [00:11:00] I learned the, that's not available
Matthew Reeves: again, it's that you've gotta solve problems quickly.
Sometimes it's in minutes, sometimes it's an hour, sometimes it's in weeks. But you, but it is all, it's always quickly
Karen Rose: figure it out. I remember, uh, getting knee replacements and having to use a walker, well, a walker and a white cane are incompatible, right? But I wasn't willing to stay home, so I ended up very unsafely using the walker as a white cane and Uber left to get directly to where I was going because I wasn't willing to just stay home.
Now the walker's in the shed.
Matthew Reeves: Where it belongs. Yeah. So you have been living as a totally blind person your entire life, and you already told us your age. So I know that the, um, world, uh, has been responding to disability [00:12:00] differently throughout your entire life, and it's different now than it used to be.
What is it, what are the changes that you've noticed and, and what has your experience been in, in, in, in regard to how disability is treated by our culture?
Karen Rose: With the advent of the computer, the iPhone, Uber, Lyft, Instacart, and DoorDash site is no longer needed in the world, period. Full stop.
Matthew Reeves: Tell me more about that.
Karen Rose: I can. Get a ride and be where I want to go as quickly as anyone else can drive there. I can shop without assistance and without having to carry five bags of groceries on my back and a white cane in my hand.
Mm-hmm.
Online, Instacart, Amazon, nevermind that I can't stand Bezos, et cetera.
Um, it's not necessary to see [00:13:00] I can order food and have it show up. I happen to be a terrible cook and a great foodie. Contrast the woman who won Top Chef, who was blind TV show
Matthew Reeves: mm-hmm.
Karen Rose: Around 2010, I think maybe have to do the research. Um, she is a blind person, partial, partially said, I think almost totally blind person who I think who is a fantabulous chef.
Me. I hate cooking, hate dishes, don't wanna do them, and can order gourmet food. Yes, it's more expensive to be blind and do it my way. Other people will do it by bus, subway, cooking, doing their own laundry and housekeeping, both of which I outsource because I believe that those [00:14:00] things can be done by people on their work time while they get to have fun.
And I get to have fun instead of working on art. Fun time, right? Uh, but other people want a less expensive life. Wanna do their own cooking, housekeeping, cleaning, laundry, and transportation on public transit. And that works just
as well.
Matthew Reeves: That's just a question of preference.
Karen Rose: It's question of preference now.
Yeah. Because we have technologies that make site completely unnecessary. A wonderful thing to have, wonderful to look at a sunset, um, see a person's face, what have you have the pictures of my animals who have died to get to remember them better, but
it's
no longer
a necessity. [00:15:00]
Matthew Reeves: And you, you started answering this question by drawing a distinction between now and in the past.
How, what, what was life like before the technology or should the technologies that you're referring to? Mm,
Karen Rose: everyone did everything in braille, which is great. Braille is perfect and we can still use braille with, uh, technology that is their braille displays and so on. But we had, for example, to hire a. To read things either by recording or in person.
We had to hire people to fill out forms. Now, as far as I'm concerned, if a form does not come online, it does not need to be filled out, end of story,
Matthew Reeves: right?
Karen Rose: If someone sends me snail mail, I will toss it. It, I love that. It's for occupant, not for me. Anyone who knows me will send email. So if I tell a doctor's office, please send email, [00:16:00] and they choose not to and don't get paid, guess what?
They don't get paid. And then they call and say, you haven't paid us this copay or something. I'm like, yep, you didn't follow instructions. I'll happily pay you now.
Matthew Reeves: What, what about, uh, I mean you mentioned Instacart and just the basic activities of daily living, of getting, you know, eating and living and transportation.
It is easier now. It is very expensive now to use those services as you men, as you mentioned, but they do exist. Um, what, what about
Karen Rose: expensive? I actually felt guilty as hell for what I was spending on Uber and Lyft. So I did a calculus. What would it cost to be a therapist who was sighted and owned a car.
Matthew Reeves: Mm-hmm. With a
Karen Rose: car payment, car insurance, parking, parking tickets, gas bridge tolls, et cetera. I came to between a [00:17:00] thousand and $1,200 a month. So now that's my budget for Uber and Lyft.
Matthew Reeves: I like that shift of perspective. That's the, like you said, the thinking out of the box, the creative problem solving and, and recognizing that, uh, just because something has a cost doesn't mean it doesn't have a benefit as well.
Karen Rose: And if I owned a car, what would that cost be?
Matthew Reeves: Right. Right. The opportunity cost. Yeah. Um, can you tell us, I, I know from talking to you before recording, uh, that you've been an advocate for disability rights for a very long time. Uh, can you tell us some of that story?
Karen Rose: Um, I found out about disability rights when, uh, national Federation of the Blind was organizing for the first time in Illinois where I was growing up, um, and was a part of that for a very short time before going off to college in St.
Louis and grad school in San Diego and then up to San Francisco where I always wanted to live. [00:18:00] Um, but I found out a little bit about their philosophy. They, there are mixed opinions on National Federation versus American Council. Mm-hmm. Um, national Federation tends to have one point of view on what blindness should be.
Um, American Council tends to be a little bit more, um, forgiving on people doing things their own way. I'm actually part of neither group right now. Um, because I think we really need to, I, uh, work together and because of some very complex history between the two national organizations, um, no, not well, about the fact that the, they sometimes go in different directions in, uh, what was it, 19?
I forget what the year was. Um. I [00:19:00] was walking by in San Francisco, um, just going from the job I had, which was incredibly difficult to get in the first place, and was a training program for people who were unemployed at the time called cda. Um, I was just walking somewhere and there was a whole group of people standing outside.
I was like, oh, what is this? It turned out it was a demonstration in front of what was then the health education welfare building.
Matthew Reeves: Hmm.
Karen Rose: Um, to force, uh, I guess it was Carter at the time to, no, I guess it was Bush at the time, to sign regulations that would give us our first civil rights. Um, this was before Americans with Disabilities Act.
This was section 5 0 4. Of the Rehabilitation Act of [00:20:00] 1973.
Matthew Reeves: Right. It was passed in 73, but it wasn't, didn't, wasn't given any teeth initially, as as I understand it. Yeah.
Karen Rose: It needed, it needed to be signed by the president.
Matthew Reeves: Okay.
Karen Rose: We were not part of the Civil Rights Act of 1964.
Matthew Reeves: Right.
Karen Rose: Of various races, religions, ethnicities were part of that.
We weren't, we didn't have any civil rights. Sorry, forgot you guys. Forgot that. Some people of various and all races, ethnicities, religions, have disabilities. Guess what? Woo-hoo. Right. So this was our first civil rights. I decided to hang out with these people and see what they were doing. Ultimately they went into the building and I followed them.
[00:21:00] They had been organizing for months. I had no idea this movement was led by quadriplegics.
Matthew Reeves: Mm-hmm. And
Karen Rose: Ed Roberts, Judy, human, very, very competent people. I was 23, something like that, 22, 23. And the first thing I did was call my boss and say, Hey, I'm staying overnight in this building. I won't be at work. Is that okay?
Uh, what do you think? Well, three, three and a half weeks later, he decided I had to come back to work. Um,
Matthew Reeves: so just to,
Karen Rose: I didn't, so just to
Matthew Reeves: clarify this, for, for anybody who's not familiar, you were describing, stumbling upon by accident the famous landmark. 1977 sit-in that insisted on national, with national cameras on, [00:22:00] uh, an, a crew of disabled folks occupying a federal building saying, we demand our rights.
That's, that's incredible. That's absolutely. 'cause I, I learned about this in school and you were there,
Karen Rose: you're so much younger. I love it. It was very much run by the people who organized it. And one of the things I learned very quickly is if you can't see, you can't be seen. So I'm standing in the back of the room with my hand up trying to say something.
The people in the wheelchairs up front don't quite know I'm there. So finally I waved my hand and jumping up and down, shouting at 'em. Um, and there were a couple of blind people in that situation. There was one amazing woman. Who decided she was going to try out a power chair, an electric wheelchair. Okay.
She tried one out, she broke [00:23:00] her leg running into a wall. Oh no. She continued on with the group that the group of us, which I was not a part of, that went to dc So with a broken leg and a castle leg blind woman went with us, with, with, with our group that I was not a part of to dc uh, and joined the group there of representatives of other regions who would occupy buildings.
Mm-hmm. Um, to present to the White House saying, you gotta sign this bill. We, sorry, we weren't included in the Civil Rights Act of 64. You think maybe you're gonna include us now.
Matthew Reeves: And it worked within the space of a month. It was signed. Advocacy changed the country.
Karen Rose: Now we have the Americans with Disabilities [00:24:00] Act, which is, which has better teeth Right.
And covers more than education.
Matthew Reeves: Right, right. Um, yeah. That was 13 years later and it expanded those, those, those initial ideas that were exclusive to education and it broadened it to more access throughout society.
Karen Rose: ADA has subsequently been rewritten, and there are a whole lot of amendments that are better.
However, when this administration suspended diversity, equity, inclusion, even our fellow minorities, and keeping in mind that we are the only minority group that everyone gets a chance to join. That's right. Even our fellow minorities have forgotten that the last letter in what the administration was [00:25:00] trying to revoke is a, for accessibility.
Matthew Reeves: Mm-hmm.
Karen Rose: It's DEIA. Right. They don't want us either anymore.
Matthew Reeves: What do you think, um, and I know this is a very, there's a question with an individual answer for every person, but from your perspective, what do you think, um, people who might be listening to this podcast can do to promote equity and inclusion for themselves and other people with disabilities and really any marginalized or, uh, a community?
Um, as, as we do face these attacks.
Karen Rose: For starters, demand it. Demand the accommodations you need in life and in work for another joint organizations, whether they're American [00:26:00] Council and National Federation of Blind, or whether they're more coalition based organizations that include multiple disability groups.
I tend to be a coalitionist. Not everyone is. I think we need to work together. On the other hand, blind people get lost, uh, because, for example, our accommodations may be more expensive. Or when we started with, um, ramps on street corners, which are wonderful, they were put in in such a way that they were at an angle and we couldn't cross the street.
They needed to be put in at right angles. So that they went in one direction and the other direction,
Matthew Reeves: right.
Karen Rose: With some kind of a, an angled sort of mishmash so you could end up in the middle of the street. Right. Because we [00:27:00] hadn't been considered, well, if we were more involved in coalition as we became, as a result of some of that, um, we now have ramps we can use.
We now have people fighting with us for accessible pedestrian signals, which are the beepers that tell us when to cross the street. Right. That wouldn't be needed for other people crossing the street with other disabilities. So we fight for their ramps and they fight for our accessible pedestrian signals.
Matthew Reeves: The power of coalition. Yeah.
Karen Rose: And I, there's a whole historical context to this, for example. Blind people, people with vision disabilities. If you qualify for supplemental security income, the welfare program, not, um, social Security disability insurance for which you have to have worked for 10 years, um, before [00:28:00] applying for, but if you qualify for the welfare program, uh, supplemental security insurance, blind people get more by some small amount than do people with other disabilities at the time of the sit-in, that was somewhat resented.
Why do we get more? Because we organized 50 years earlier.
Mm-hmm.
Because National Federation, which was the first organization and American Council split off from them later. Because that started 50 years before and not for any other reason. Why did it start 50 years before? Because people like Jacobus tenBroek, a blind lawyer, began organizing it.
And because blind people could leave our homes to go to meetings. This is before Zoom. Well, if you were in a wheelchair, maybe not so much, you might not be [00:29:00] able to get down your curve. So of course, blind people organized earlier we could.
Matthew Reeves: Yeah. Yeah. And that ended up spurring, uh, change for the entire disability community.
Not always at the same time, but, but, uh, a rising tide lift cell ships, I suppose. Yeah, yeah,
Karen Rose: yeah, yeah. Exactly. And the amount, the amount of difference between, uh. People with vision disabilities and uh, people with other disabilities in the specific SSI program is not a whole lot. And the amount that people are given in that program is not sufficient to live on.
Matthew Reeves: No, it's not.
Karen Rose: I did initially, but that was because I managed to get into Section eight housing because I walked past a building being built that was a section eight building and walked over and said, oh, [00:30:00] what's this? What's under construction? Oh, it's a section eight building. Oh, can I get into that? As a grad, as a blind grad student?
Oh yeah. But all the units are taken. Well, I lived in a regular unit a block and a half away, uh, got on the waiting list and within the first year somebody died there. Just an old person. And so I got their unit. Well, that's no longer possible. Now we have, you know, closed waiting lists, and when they're open, they're open for 10 year, you know, with a 10 year waiting list.
Matthew Reeves: Right. There's a tremendous lack of affordable housing as, as, uh, we've all heard that's a, a major topic in the world today. Yeah. So how has your story, uh, of advocacy turned into a story of career? You, you now work as a helping professional doing therapy and career, uh, guidance and coaching. Tell me how you got into that.
Karen Rose: Um, I, the [00:31:00] biggest disability. In blindness. I hate to say vision loss because I haven't experienced that, but the biggest disability in blindness is lowered expectations. Society expects us not to work. Fortunately, my family did not have that expectation. Social security, by the way, does hold that expectation.
Matthew Reeves: Mm-hmm.
Karen Rose: If you are blind or visually disabled to their standard, you are presumed disabled. And remember that disability in social security terms in this country means by definition, the inability to work so much for the Puritans and the Calvinists. You are disabled if you are not able to work. [00:32:00] And if you are blind or have cerebral palsy, you are presumptively disabled for social security.
So, for example, this is a digression from your question, but I was considered unable to work by definition, although I didn't even know about this program until I got to California for grad school. Um, my parents didn't know about these programs and didn't care, or they may have known about them, but they didn't want to.
I was just assumed to go to college and grad school and get a job like everybody else. Um, later on in my career, after having left Medicaid and social security and so on, um, I was in a situation where I was testifying for. One, one by submitting paperwork, the [00:33:00] other in actual administrative job, administrative judge, uh, hearing.
Mm-hmm. Four people who were considered able to work by social security. And I remember walking into the room with one client's lawyer with an administrative law judge, and the A LJ says to the lawyer, oh, is she your client? And he looks over at his client across the room and says, no, she's my expert witness.
He's my client over there. Well, he was someone with the essentially personality disorder making, making it very difficult for him to hold and maintain a job.
Matthew Reeves: Mm-hmm.
Karen Rose: And we had planned this out. Such that I would be testifying because I had been seeing him in therapy for [00:34:00] years. Uh, pro bono, the psychiatrist couldn't figure out, well, how is this guy affording therapy?
Well, I have one or two people pro bono, uh, that satisfied the psychiatrist. Right? Well, who was testifying? That wasn't the answer he was expecting. He also then said, well, thank you for taking care of this guy on his way out. But we wanted to shock the judge because we knew that as an A LJ, he would assume that the blind girl was supposed to be disabled and for some reason not getting her disability.
And the guy over in the corner was, well, he didn't look disabled. And so we had set this thing up. Meantime, when it came time to testify, uh, we had the client leave the room because we were doing mental health. Uh, comments. And I got to say [00:35:00] in testimony that I was born totally blind. I did not want the a LJ to think, oh, well, she lost her sight after she got her license.
As one therapist once told me, oh, you must have lost your sight after you got your license. I said, no, you don't get to take that in from one life to the next. You actually have to earn it each lifetime. Yeah, yeah. But the assumptions that are made, oh, you must have lost your lifetime. Your, your license before you lost your sight.
Mm-hmm. Is a, an example of the kinds of assumptions that are made. And it's all too easy for people to internalize those kinds of assumptions. And for people who have always been cited. To have unconsciously internalized those kinds [00:36:00] of assumptions, which now apply to themselves, but those assumptions aren't true.
I know of blind farmers, um, a blind doctor, a couple of them, several, many blind lawyers. My representative in the House of Representatives right now was born totally blind. Uh, Latifa Simon. Wow. Um, that's great. From Oakland, California. Yeah. So you wanna know about my career story, and I get off on a tangent, but internalized disability phobia is really the biggest problem to careers.
Well, I started out in Chinese and Japanese philosophy and religion, Asian studies until I realized that A, it was gonna be really hard to figure out a career with that B, in [00:37:00] order to go on in Buddhist studies, which I found really interesting. I needed to have a master's in Chinese, Sanskrit, or Tibetan at the time.
This is no longer true, but there were no braille systems in those languages at that time. This is no longer true. And so I was going to need to do a ma, a master's in linguistics to create a brail system in order to do a master's in a language in order to do a doctorate in Buddhist studies. And that was simply more school than I wanted.
I was in psychotherapy at the time and decided that I really wanted to become a therapist. So I majored then in psychology and minored nation studies, finished my undergrad. And it's almost impossible for an undergrad in psychology to find work. Right? So it took me for, um, and I ended up in a training [00:38:00] program for people who were unemployed at the time, um, working with people who only I and my supervisor agreed could do psychodynamic psychotherapy, people.
Who were dually diagnosed as having a severe mental health condition and an IQ below 70 that is, uh, considered, uh, developmentally disabled.
Matthew Reeves: Right?
Karen Rose: Um, I ended up working with that group, um, going back to a master's, finishing that in a year. But that, let's see now I've got this out of order. Actually. I went back to a master's, um, after finishing undergrad to a first master's that was in San Diego. I wanted to go onto the doctorate in psychology, but I had to hitchhike [00:39:00] from home to field placement to school to home every day.
At that time in San Diego, there was no transit and we didn't have Uber and Lyft. Right. So I stopped at one year, got actually my first job, which. My father's friend helped me get in, drug and alcohol, got laid off from that. When they laid off, a whole bunch of people became suicidal because I couldn't figure out work to do, and then got into this training program.
So that was actually the actual sequence. Then went back to school to do what I thought would be a doctorate and ended up being four years, but finishing with the master's in two years [00:40:00] and not completing the dissertation because I realized I didn't wanna do research. Mm-hmm. I wanted to see clients
Matthew Reeves: right
Karen Rose: Uh, by that time I was 60 and everyone said, are you getting another license? You're old. I said, because I am, because I can. Then I spent a whole bunch of years being suicidal because no one would hire the blind girl. I got questions that are now illegal.
Mm-hmm. Don't you get to work every day? Two buses and a train like I got here. Um. How would you manage a client who pulls a knife on you? How do you manage a client that pulls a knife on you? How about having sufficient clinical skills that you talk with a client in such a way that they don't want to pull a knife on you?
You think
Matthew Reeves: seems like a good idea? Um,
Karen Rose: you know, questions that now would
Matthew Reeves: be
Karen Rose: highly illegal. Um, [00:41:00] so I was suicidal and got back into therapy because the one thing I could not imagine, I could imagine being alive as a blind person with no problem. I could not imagine never working. And after doing all of this school and living poor, I didn't wanna do that life.
So I ended up starting my own practice. My first client was a blind person. I had taken from internship, the only blind person I'd seen ever.
Matthew Reeves: Mm-hmm.
Karen Rose: And she paid me $7 an hour and I still wasn't licensed yet, so I was paying a supervisor $65 an hour and living on $500 a month and subletting an office for a couple hours a week.
But I wanted to work [00:42:00] subsequently. Ended up getting a job at, um, a university that no longer exists and worked there for a number of years doing the clinical side of career coaching.
Matthew Reeves: Mm-hmm. They
Karen Rose: were teaching a master's program to career counselors, uh, a master's in career counseling. That was. Um, in the school of management.
So they had no clinical, um, expertise there. Right. And so I was co teaching the clinical side of career coaching. So I went back to my private practice.
Matthew Reeves: In your story, you, you talk about, you know, so many hurdles that you face, so many that they really dragged you down emotionally.
[00:43:00] How, what was it that for you, um, what did you use to lift yourself up on the dark days? How did you manage to climb out of that depression?
Karen Rose: I'm, I'm going to finish. I, I'm gonna quick finish this and then go to there. Um, 'cause that's really important. Um, I ended up getting a job at SF State Counseling in psych just after I got laid off from this job and I really needed that job.
And I, we were the one of everything, counseling center. We had a director who, uh, was an African American psychologist. He wanted to be the one of everything. He didn't have one of me, it took him forever to hire a person with disability, but I did get hired there. Loved it. Had always wanted to work in a college counseling center because undergrad was one of my favorite parts of life.
And so I commuted out there part-time for 14 years. It took me 13 years before that to have gotten that job. That is, I was [00:44:00] working both in practice and at the other university, but checking San Francisco State's job board every two weeks for there to finally be an opening. There was an opening, there were two full-time openings.
I couldn't go full-time. Because I already had a practice starting, which I lost money on for the first nine years until getting onto insurance companies. They didn't care whether I could see or not, but I got comments like, well, I'd prefer you a blind person. If I knew anybody, I wouldn't want my clients to be scared of you, quote.
Or I always tell my Medicaid clients that you're blind. I'm like, and do you tell them my race, my ethnicity, my religion too? Oh no. But I wouldn't want them to be scared of you stuff there is just crazy. Uh, when I was offered full-time tenure track along with three other people at who were part-time, we all split the two full-time jobs.
It's important to [00:45:00] apply for things that you can't take. Um, even though like this was full-time and I needed my practice part-time. That was true of everyone. So we ended up splitting into four positions. Um, and I love that position. When I was offered tenure track 14 years later with the other, with two of the other three people wanted left already. Um, I decided I wanted to go back to the practice that I was now doing 35 hours a week, plus working 20 hours a week for the university.
I didn't want to give up half of my practice to go full-time at the university. And I'm now in full-time private practice now doing a lot of career coaching because of all the crap I went through looking for work. I always wanted to add career work to what I did
because I think it's possible if I can do against the totally blind, 70% [00:46:00] unemployment rate for us, still for totally blind people after, right after ADA, after ADA revisions, so on and so forth.
If I can do what I love doing six and a half days a week at 73, anyone can, and I can help other people do that too. How do I get through all this crazy stuff in psychotherapy? For one thing,
Matthew Reeves: therapy helps.
Karen Rose: Having a wonderful Jungian analyst who was amazing, he taught me more about how to be a therapist than any school ever could, and anyone who wants to be a therapist, I highly recommend get into your own therapy.
And agreed.
This guy was amazing and got me through, even Helo made the comment, well, don't you wanna work with blind people? Um, you know, you could be at the top of [00:47:00] that field. I'm like, no, I don't wanna be at the top of the blind ghetto. I wanna work with blind people and everyone else too. I got many people saying, well, you would've such an easier time if you wanted to be a vocational rehab counselor.
I'm like, yeah, but I don't wanna be a vocational
Matthew Reeves: rehab counselor.
Karen Rose: Yeah,
Matthew Reeves: right, right. That's kind, it's kinda like somebody saying, well, don't you wanna work with people who are only over five foot 10? It's like, exactly. No, exactly. I don't, I wanna work with the people of all heights. I wanna
Karen Rose: work with everyone now.
Right. And I do. Um, I have four or five people with disabilities of whom maybe two or three have vision disabilities. Um, and, uh, everybody else that I have is non-disabled. Doesn't really care what I discovered very quickly. So the first 10 or 12 years of practice, I asked everyone, do you, you know, [00:48:00] how do you feel about working with someone who's not looking at you?
I can refer you to a sighted therapist if you'd like, because I had one supervisor who said, A blind person can't be a therapist. I said, why would you take me for internship? And he said, well, I didn't know that. Then you remind me of my mother. Um, so much for him. Wow. Yeah, I mean, part of what got me through was anger that I'm a hard ass bitch. I don't put up with shit. And the one, what got me suicidal was the idea of not working and being poor forever.
And there is nothing wrong with that life.
It's not mine.
Matthew Reeves: How did anger, I, I wanna hear more about how anger served you. What, how did anger, how was anger helpful for you?
Karen Rose: I started my own practice because nobody wanted to hire me. I lost money for the first nine years until I [00:49:00] found someone who could help me with the forms that were, at the time only in print to get onto insurance panels, at which point, and oh, and they kept saying, well, we're full.
We have too many therapists. And I thought about calling them and I called them all back and I said, how many blind therapists do you have? What can you do for a blind person who requests one of us? I know all five of us in the San Francisco Bay area.
Who do you have?
And all of a sudden they have room for me.
That concept, nevermind that I wasn't specializing in seeing blind people. They didn't have any of us. I knew who we were.
Matthew Reeves: So you used the anger as a fuel to,
Karen Rose: as a fuel 100%.
Matthew Reeves: Right.
Karen Rose: And I don't expect that to be true for a lot of people. Not everyone is a hard ass bitch. Not everyone [00:50:00] wants to be that person.
Um, I've always been that. I've been that since I was the blind hitchhiker at age 13 and my poor dad, the cops. Drove me home one time and tried to tell them, the cop who drove me home that you should, you know, watch out for your kid. And he said, well, I'm at work and my kid's gonna do what she does. Um, I've always been that person.
That doesn't mean that's the right way to be. And it's very easy to become suicidal when there's so much rejection and so much, well, how could you do this job? I mean, I couldn't do it with my eyes closed. I'm like, no, when you happen to have the training I have either have you, [00:51:00] you don't have my technology, do you?
Uh,
Matthew Reeves: so it sounds like for you, you never internalized those lowered expectations, but the fact that they existed. They posed a real burden, a real emotional burden, because they, those expectations were kind of baked into the DNA of the world you were trying to operate in. And that was a, that was a very challenging stretch, almost absolutely
Karen Rose: great.
Um, yeah, absolutely. Um, I did not internalize those expectations because that was not what was expected of me in my family. Right. It was assumed that, you know, I would grow up. I, I grew up in a world where disabled children was one word, but in my family, I was gonna become a disabled adult. Um, now in dating, that was a real, uh, I'm now single by choice.
[00:52:00] Um, I'm now child free by choice. Uh, my poor sister, she goes, you never got to have children of your own. And I said, you know. Don't you think if I wanted to have done that, I live a stone's throw between three sperm bangs. You think I would've done that? You know, like really? You think, um, and I would have but didn't want to have kids.
I would've loved to have had a partner, would still loved to have partner, but the number of people who I got saying, you know, I know this guy and it would be a fantastic message for you and you should talk to him. And he's blind. Oh, what kinda work does he do since work is the center of my life work. Oh no, he doesn't work.
I'm like, I'm sorry. I'm not up for supporting someone who doesn't work and I don't have anything in common with someone who doesn't work because I work six and a [00:53:00] half days a week. I love what I do. What would I talk about this blind person about? Why is blindness something to have in common?
Matthew Reeves: Right. It, it's going back to that idea that it is, it's a trait.
It's not an identity.
Karen Rose: Agreed. It's an identity relative to organizing. Hmm. You wanna do political work, but even, for example, Latifa Simon, the, uh, handpicked successor to Mayor Barbara Lee, who was our House of Representatives rep for somewhere around 30 years. Mm-hmm. An African American, Muslim, totally blind from birth woman. Now even she, I had to look up the fact that she was blind. That is not her calling card.
Matthew Reeves: Mm-hmm.
Karen Rose: Um, I'm happy that she's blind, but that's not what we have in common. We have much more leftist [00:54:00] politics in common. Right. Her politics are more important than her sight.
Matthew Reeves: That's a, a such an important note that how we define our identity is there to serve us. If it serves us well go for it.
If it's not serving us well drop it. Like we, we get, we get to be in charge.
Karen Rose: If you're applying, if you're applying for something that is a blindness or disability based org, then put your connection to vision loss. On your resume and your cover letter, if you're applying to a position that does not involve disability, don't put it there.
They have no reason to know that until you walk in the room with your white cane or guide dog.
Matthew Reeves: Right, right. And did we we're, uh, we're starting to run short on time, so I wanted to ask you, uh, if there's any other final thoughts or, or [00:55:00] messages that you think, and you, you work as a therapist and a lot of your clients, not all of your clients have disabilities, and some of those clients have vision impairments and this audience is about that.
So what, what are the most important messages and lessons learned, uh, that you help your clients with, uh, that, that really promote healthy, happy lives and the change moving, changing, uh, in a direction that, that is promoting health and nourishment for your clients?
Karen Rose: Actually, about two or 3% of my clients have disabilities at all.
Matthew Reeves: Okay.
Karen Rose: Um, because I didn't wanna be at the top of the disability ghetto. I wanna work with everyone, the number of, of people who say things like, well, you'd be such an inspiration. Mm-hmm. I never studied being inspirational. I only studied being a therapist. Right. I never studied on this inspiration porn stuff.
Matthew Reeves: Yeah. I never, I never read the brochure on how to be an inspiration and, [00:56:00]
Karen Rose: and the idea that I would be some kind of inspiration. Well, you walk across the street and like, no. What would be much, much more inspiring is if I didn't walk across the street and I stayed home, because if I stayed home, I would have to stay with me 24 7 and that would be horrific.
So, so in, in terms of, I, I love working with everyone. I often work with people. If I'm working with people with disabilities, I'm the wrong person for people who wanna be in a lot of grief. I know a couple of other therapists with disabilities and two other blind therapists who are great with that because they've lost something.
I don't have anything to grieve. I tend to work with people and would love to work with anyone who is post-traumatic growth. Okay. I've [00:57:00] done most of, I'm never gonna stop grieving. I've done most of that. I've learned some of my technology. I can get to where I want to go by hook or bike crook, whether I am hitchhiking, uh, in a Waymo car in Uber and Lyft, hiring a driver, taking two buses and a train.
Uh, I can get to work now. What is it that I would do if I didn't have a disability? If I could see 20/20 again, what would I be doing? Now, what is it that I would love about doing that? What would I love about being an airline pilot, truck driver? What would I love about the thing that I think I can't do? Now,
how do I do that [00:58:00] anyway? I love to travel. Would I like to be a travel agent? If I can't be a pilot, I love to help people. Who do I wanna help and how do I wanna help them? So I'd I've been a nurse. I can't read all the equipment now. Would I like to be, uh, an, a referral nurse that, um, I forget what they call those people, but the advice nurse that, um, answers telehealth calls that are, my kid has 102 fever and a sore throat and can't stop throwing up.
Do I need to take them to the ER or urgent care?
Matthew Reeves: Right, right.
Karen Rose: That's the advice nurse. Okay. I can't necessarily be a hospital nurse [00:59:00] now. How about I be an advice nurse? What is it that I love about what I think I can't do Then?
Am I sure I really can't do that thing? What if I decide I can and figure out how I'm going to do it? Or what did I love in that thing that I want to be able to do in another way? I no longer ask the question, can you do it? It's a wrong question. The question is, how am I gonna get it done? How am I going to read the thermometer when I get COVID?
Oh, that's right. There's a talking thermometer, right? Um, how am I going to get to this retreat that is three counties away? No, I'm not gonna do [01:00:00] Uber and Lyft. How am I gonna find a driver? How am or am I gonna just hitchhike? How am I going to do this work on my farm that I've always done an a tractor? Am I going to hire someone?
Am I going to figure out how to add driverless technology to my tractor?
Matthew Reeves: Mm-hmm.
Karen Rose: There is now a just about to come out. I've been told a driverless wheelchair.
Matthew Reeves: Oh wow. That's great.
Karen Rose: They'll not do stairs 'cause that's a different, um, piece of equipment.
Matthew Reeves: Right.
Karen Rose: But it will be a driverless
Matthew Reeves: chair. Yeah. So by shifting the question, it opens up opportunities.
Yeah. That when you, when you're, when you're asking the wrong question, it can feel really hopeless 'cause it feels like everything is closed off. But if you switch the question, then things start to [01:01:00] open up and you can find some hope.
Karen Rose: Can I do, this is not a useful question. Right. Throw it away. How am I going to get this activity done?
How am I going to accomplish this?
Matthew Reeves: How am I going to do this?
Karen Rose: How am I going to do it? Think about things out of the box. So yes, I can hire a sighted person to do it. I can also use ira, uh,
Matthew Reeves: technology,
Karen Rose: a visual assistant.
Matthew Reeves: Mm-hmm.
Karen Rose: I can learn to do it myself, and it may or may not take me longer. I can invent a new way to do it myself.
Right. I can talk to other blind people about how they do it, because guess what? We have the internet now
Matthew Reeves: and I love how this connects to the first thing you were saying that, uh. It is about [01:02:00] rejecting those lowered expectations and not internalizing them and saying, there is a solution to this problem.
It may not look like what it looks like for everybody else. It may not look like what I envisioned it to look like originally, but I have no reason to lower my expectation for myself. I can figure this out.
Karen Rose: I will figure out how to get something
Matthew Reeves: done. Yeah. Well, thank
Karen Rose: you so much and I'll figure out a way and if anyone has something they want help figuring out, email me, text me, call me.
I love doing that stuff just even on my own time, even if I, I'm not being paid for it. I love problem solving. I do it for fun.
Matthew Reeves: That's great. Well, thank you for that offer. I'll make sure to put your email address in the show notes for people to reach out and get a little help with the problem solving.
And I just want to thank you for your time and for your in, for your story. I almost said the word inspirational, but I know that's a tricky one.[01:03:00]
But, uh, I, I especially appreciate hearing, um, your story of the 5 0 4 sit in 1977. That's just an amazing piece of history that you had a front row seat too. So thank you for sharing that with us and for all the work you've done through the years.
Karen Rose: The tours, there's a touring exhibit of the, uh, 5 0 4 sit in.
I was a teeny weeny, weeny part of that.
Matthew Reeves: Well, I will, I will look out for that. Hopefully it'll come to my neck of the woods and I'll encourage everybody else to as well. So thank you. Thank you, Karen. I really appreciate your time.
Karen Rose: Thank you, Matthew. I think you're doing an amazing thing with this podcast.
Matthew Reeves: Oh, well thank you for the kind words. I appreciate it. I'm
Karen Rose: a subscriber. Everybody subscribe.
Matthew Reeves: Thank you. All right. Bye-bye.
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OUTRO
Matthew Reeves: Thanks for joining us for this episode of Insight Out. You are the reason this podcast exists and we'd love to hear from you. You can leave us a voice message at [01:04:00] speakpipe.com/insightoutpod. That's speakpipe.com/insightoutpod. There, you can share your thoughts about today's conversation, suggest a topic for a future episode, or tell us about your experience living with vision loss. Again, that's speakpipe.com/insightoutpod.
Insight Out is produced by Integral Mental Health Services, my private practice that offers psychotherapy for adults in Georgia and disability adjustment and chronic illness counseling nationwide. Visit us at integralmhs.com and you can visit insightoutpod.com to catch up on all the episodes and to find links for subscribing in all the major podcast apps. A video version of this podcast is available on YouTube. Search for the channel, using the handle [01:05:00] @inSightOutPod. You can also find us on social media using that same handle. I hope you'll join us for the next episode of inSight Out. Subscribe now in your favorite podcast app to stay connected. Thanks again for listening.