Elisabeth LaMotte:
From the National Association of Social Workers, this is Social Work Talks. I'm your host, Elisabeth LaMotte, and I am so, so excited to be speaking with Rebecca Alexander today. She is a social worker. She is a keynote speaker. She is a tireless disabilities rights advocate. She is an author. She is in private practice. Her book, which I am holding up for our viewers, not fade away, is incredible. We're going to be talking about all of that and more. So Rebecca Alexander, welcome to Social Work Talks. Thank you for joining us.
Rebecca Alexander:
Thank you, Elisabeth. I'm so delighted to be here with you today.
Elisabeth LaMotte:
So we are delighted to have you. And could we begin with you sharing a bit about your journey toward the social work field?
Rebecca Alexander:
Oh man, sure. So wow. My journey towards the social ... I feel like I was sort of born and raised into the helping profession or just a life of helping. My paternal grandmother was very active in her community in Chicago, and she really helped underprivileged students of color be able to better access academic endeavors and really to create a sense of equality within her own community. And so my dad was always very, very active within the community. And so I think it's something that I just sort of was raised with around me. And that is the importance of building and maintaining and sustaining a community. I was raised as a reformed Jew in Berkeley and Oakland, California, so super crunchy and very, very community focused and oriented. But one of the things that I really remember growing up was that we'd have tzedakah boxes. And a tzedakah box is basically ... Every Sunday we'd go to Sunday school, you'd have a tzedakah box and you'd put a quarter in the box.
And at the end of, let's say the year, Sunday school, you would then donate whatever you had in your tzedakah box to a charitable organization. Now, the idea of tzedakah, and I'm not a religious person by any stretch of the imagination. In fact, when anybody asks me if I'm religious, I say, "Well, how do you spell God backwards?" And dogs are sort of my pride and joy and what make me feel connected and grounded and spiritual. But tzedakah in general is not about being charitable.
Exactly. So that the world is an unjust place and that our responsibility to create more of an evening of the scales. And that always resonated with me, and that was really what I was taught in my family. So when I was 14 or so, I was, I guess it was 13 or 14, I heard a speaker come to my Tuesday night school, which was basically at the temple that I went to, and he had HIV. Now, this was in the '90s. I lived in the San Francisco Bay Area, and HIV/AIDS was really sort of the focus of everything. And it was very much an epidemic, and people really had no idea whether we were going to ever find treatment. It was really a dire diagnosis, but his name was Scott Fried, and he came to speak to us. And I just remember his vulnerability and his honesty of being a gay man living in New York City he was visiting.
And he spoke to us just about how important it was for him to have a community and for him to speak out about living with a condition, a disease that might very well kill him and wanting to destigmatize HIV and AIDS. And I was so moved by his talk that I started volunteering for Project Open Hand, which was an organization that delivered meals to people living with HIV and AIDS in the San Francisco Bay Area. And from that, I ended up, my dad nominated me to run with the Olympic Torch. So I ran with the Olympic Torch in the 1996 Atlanta Games, and it was all based on my own diagnosis, which we'll get to. And so over time, I just always felt this sense of needing to be a part of something bigger than myself, of understanding how much and how many people are out there who are struggling, and that I could do something about it.
Elisabeth LaMotte:
You're talking about hearing a keynote speaker deeply move you, and those remarks stay with you. And I want to share that the way that you came on my radar, Rebecca, is I volunteer with the Wentz Center, and I was there a couple years ago when you gave the keynote speech, and I will never forget it. There were certain moments of it that I carry around with me. So as we share and move into your diagnosis, if that's okay, I am thinking about those remarks and of course about your book. So if you're comfortable describing that for our listeners as the next layer of your journey towards social work, please do.
Rebecca Alexander:
Yeah. Well, thank you for saying that. It's meaningful to hear that. And so I have something called Usher Syndrome, and Usher Syndrome is the leading genetic cause of both combined progressive deafness and blindness. So I was diagnosed at the age of 12 with retinitis pigmentosa, which is the vision part of my condition. And essentially, it affects the rods and cones of the eye. And initially, when your early stage of retinitis pigmentosa or Usher Syndrome, you have difficulty seeing at night because your rods and cones are what take light and process it and tell your brain what you're seeing. So I had difficulty seeing the Blackboard at school. I told my dad, he took me to an optometrist to get glasses. They said that their equipment was not sophisticated enough to identify something that they had seen in the back of my eye. And so they referred us out to an ophthalmologist.
We went to UCSF, and then we went to another medical center, Stanford, and they said that I didn't just need glasses for distance to see the blackboard at school, but I actually had a blinding condition. And they said that they believed that by the time I was about 30, that I would be completely blind. Now, when I was little, I had what was known as a cookie bite of hearing loss, and we figured that it was because I had frequent ear infections. So the only thing I really knew is that when I would watch television, I would watch with my head cough to the left, and I would look out the side of my left eye. And we just always thought it was a funny quirk. My brothers would sort of tease me about it, but we never really knew why. And then of course, later, it turns out that my left ear was my better ear.
Now, I have to also preface this by saying this is my memory and understanding of it. My mom obviously has a much more accurate ability to recount what the circumstances were. But at some point I went to see an audiologist when I was young, and she said that I had that cookie bite of hearing loss. They thought they did testing and testing, and then she tested me again because the fear was maybe that I had a brain tumor. Turns out I didn't have any of that. And so later, when I was at the University of Michigan as an undergrad, I had really loud ringing in my ears, tinnitus or tinnitus. And sensation was that I couldn't hear people speak to me over the ringing. Now, war veterans or musicians often experience tinnitus or that ringing, but it was something that wasn't going away. And so after about a week, I decided to go and see an otolaryngologist.
Elisabeth LaMotte:
When people say that that is terrible, that it is such a painful experience, just the tinnitus alone. And it was interesting in your book to read about the arc of all of that. And of course, listening and hearing is such an important part of the work that we do as social workers. So I find myself very curious about your hearing and your listening as you share this.
Rebecca Alexander:
Yeah. Yeah. So you're absolutely right. Tinnitus now, so I'm cochlear implanted. It's been a long progression. I had a hearing aid that I was given when I was in high school. I worked for my AP history class because of course I had a teacher who mumbled terribly, but I was so self-conscious about it that I would sneak it out of my ear and put it in. And so in college, I then had to get much stronger hearing aids. And luckily, when you wear hearing aids, it actually helps you amplify the sounds around you and it softens or quiets more of the tinnitus that you hear. For me now, the tinnitus is still there. Now, when I have my ears off, my cochlear implants, I hear it more, but it's almost like hearing the refrigerator running like you hear it, but you just ignore it. I'm just so used to it.
It's been 20 some odd years that I've lived with it. But when you first experience tinnitus, it is absolutely ... I mean, you feel like you're losing your mind.
Elisabeth LaMotte:
And this is happening to you as you have with such grace and dignity navigated severe sight loss at the same time. So how has this shaped who you are, who you've become, and who you are as a social worker to navigate all of this?
Rebecca Alexander:
Yeah. So it's interesting because I ended up doing a dual degree in social work and public health. And I think back in the day, I really thought that I wanted to go to the Francophones part of Africa and do some really boots on the ground work and to really just be able to immerse myself in a culture, in a language. And I applied for various programs. And as it started to become more and more real, what I realized was like, uh-oh, well, what happens if I'm in a very remote part of Africa or wherever I might be placed and my hearing aids break down? It's not like I can just pop over to the audiologist or that I will have any way of being able to get the support that I need. So I had to really think about what would be realistic for me.
And I have a history in my own family of mental illness. It's been a long journey for me of being able to develop my own understanding and appreciation for the mental health issues that my own family has faced generationally. And I always really loved learning about people's stories and knowing what made them tick. I'm a very curious person by nature. I ask a lot of questions. And so I realized that, all right, well, this would be sustainable for me, that I would be able to become a clinical social worker or I could work in an office where I had control of the environment, the lighting of maybe the volume. And early on when I started practicing, I had hearing aids and my hearing loss was progressing. And so I had an FM system, a microphone, and I had to develop the ability to let my clients know that I either needed them, not all of them, but those who didn't speak very loudly.
And many of our clients don't because they're speaking a lot of things that bring up shame or so many different emotions. And so having to ask them to wear this microphone or I would put it on the couch next to them was really challenging at first because I did not want ... We are the helpers. Helpers don't have needs. I'm not here for you to meet my needs or recognize that I even have needs. And so that was very early on something that I had to face.
Elisabeth LaMotte:
And yet I would imagine that there are ways that this deepens and shapes the clinical process. Can you give an insight or an example of that? Because I think it's so important in how we think about the question of when a therapist does have a diagnosis and what does that mean and what does that look like?
Rebecca Alexander:
Yeah. We're all living with something. Part of what I think makes therapists the best therapists are the ones who have the very real and lived experience themselves, but it's not just the real and lived experience themselves because we certainly know there are plenty of therapists out there who have whatever their circumstances are, diagnoses are, and they don't hold themselves accountable for what they need to do to take care of themselves. I personally think that as a psychotherapist, it would be unethical for me not to see a therapist of my own. And I know that there are many therapists out there who have so many excuses and so many reasons. It's unacceptable in my mind. You are responsible for really showing up for so many people and so much emotion dysregulation and so much of the transference and countertransference. It's not something that's sort of a good or bad thing right or wrong.
It's actually something that's so important in taking care of yourself.
Elisabeth LaMotte:
Right. And being real, I'll just read this one little passage from Not Fade Away, your beautiful book. This is on page 169. And this is not with respect to clients. You're saying this about a friendship, but you say, "Being honest just feels better. It's not nearly as exhausting as keeping things in, which is so much work. And my honesty would eventually help my friend open up about things that she generally wouldn't talk about. " It's just one little snippet that I think represents how very real you are in the book, how real you are as a keynote speaker, and how real you have to be with your clients, not in overstimulating them or overwhelming them with your diagnosis, but in being human, showing up as a human.
Rebecca Alexander:
Yeah. I so appreciate you sharing that excerpt. And what's so important that I need to provide some insight on that is that I grew up as a terrible liar. I lied about everything. I was so ashamed about who I was. I mean, I lied about the stupidest things. Now, it was never malicious, but I had so much shame about who I was and I interpreted things. I didn't think that I was the little girl. My mom always wanted all of the stories that we all have and no. And it was over time that I realized that the saying, it's a 12-step saying, "You're only as sick as your secrets and how much shame thrives on secrecy." And so part of what I did in this book was that I was actually very honest about a lot of the I'd lie about, and it was really scary because it was hard to actually say it out loud, but I mean, I really went through it.
I used to steal a lot, a lot of things. So I want to say that when you say that I'm honest now, I want people to know that I have not always been that way, and it has been a very, very real and deep, challenging, shameful, all of the emotions that come with that journey of being able to live and speak my truth.
Elisabeth LaMotte:
From where I'm standing, I think not fade away. Your book should be mandatory in every social work program. I really mean it. I love how honest you are in this book. And when you write about how you used to shoplift, you said, "I felt like the world owes me something." And I get it. I mean, I try to imagine walking in your shoes and it's very hard to do, but I imagine that I would feel that way. I really do. And yet your honesty and the journey you take with it, I think then helps other people deeply challenge themself on indulging that perspective, which is easy to get into of where the world would owe us something because this just isn't fair.
Rebecca Alexander:
Yeah. And I think it was such a confluence of different things. I think that it was that I felt like the world owed me something because I had this diagnosis and it was kind of like an F you. And I think I also felt like, again, my interpretation was that my mom, what my mom was perfect, my mom's maiden name was Pink. And I am a twin, I have a twin brother, I have an older brother. So I just always felt like I had to be this perfect little girl, but deep down I knew that I really, not only did I know, I believed that I was bad, that I was wrong, that I was a terrible person. Because of that, this is what a terrible ... When you have a belief system like that, of course, this is what a terrible person does. A terrible person shoplifts because I have no morals, I'm unscrupulous, all of that.
Elisabeth LaMotte:
You have a twin brother as you're mentioning, and I do think that having gotten to know you better through reading your book, and you've referenced this earlier in the conversation today, it's not just Usher Syndrome that you navigate. It is chronic mental illness. Are you comfortable talking about your relationship with your twin brother?
Rebecca Alexander:
Yes. And I want to say also that my twin brother has had his own real journey. And what I think most people don't know about my book is that the whole premise of my book is not just about me in this memoir about having Usher Syndrome and coming to terms with it. It's actually about this underlying situation where I have Usher Syndrome and he has his mental health challenges and that we are helpless in the face of each other's conditions. And I don't know that that necessarily came through.
Elisabeth LaMotte:
Oh, yes, absolutely. Yes.
Rebecca Alexander:
Yeah. So another piece of this that I want to go back even further than that. I have on both sides of my family. On my mom's side, my great-grandmother completed suicide. She took her own life. On my dad's side, my great-aunt took her own life. And for me, as someone living with Usher Syndrome and also seeing how mental health issues have impacted my own nuclear family that I was growing up with, I really realized that there was something here that I wanted to address and better understand. I wanted to know what the impact my grandmother found her. I wanted to know what the impact was for her because that generationally gets carried down.
Elisabeth LaMotte:
Yes. There's so much we didn't know then that we do know now. I think that that message in your book came through very clear and along those lines, how would you say each adversity shapes the way you approach therapy?
Rebecca Alexander:
Yeah. So to your point just about my relationship with my brother, I think when you have a disability like mine, I have gone on to ... I learned sign language when I was in college, and then I later went on to learn Tactile Sign Language. And more recently, I've learned ProTactile. And I hosted a PBS documentary about Protactile Language of Touch, which is a more recently developed language by the Deaf Blind for the Deaf Blind. And I had my cane training, I've started to learn braille. I've had all of these different accessibility features that I've had to painstakingly learn and continue to develop skills for so that I can maintain my autonomy and independence. But when you're living with mental health issues or mental illness, there's not a welcoming committee. There is not a disability services office the way there was for me at the University of Michigan.
When you see someone on the street who has mental health or mental illness, you hold your children a little closer and you avoid them. And that is something I'm so keenly aware of that so much of the stigma around that. So I feel like I'm informed from all of these different perspectives on just how fragile the human condition is. And when I was growing up, I had a therapist who was so real, and she actually taught social living in my eighth grade class. And it was like she taught us how to put a condom on a cucumber. And it was just a lot. Remember, this is Oakland and Berkeley, California, liberal and progressive, but she was someone who was so easy to talk to and she had a private practice outside of the school, and so I worked with her. But she shared with me some things that were about her own life that I found to be very meaningful because I initially was in an analytic program.
And as many of us know, when you're pursuing analysis or when you think about therapists, now we're in a different generation, I think now. Now we're in a generation of absolutely no boundaries and oversharing and too much digital content and not sort of the in- person ability to connect with people. But it was just sort of like a blank slate. And I certainly know that I used to think that like, oh, I guess therapists just haven't figured out. They know what the drill is. How many times have you heard someone say, "Well, my therapist says."
Elisabeth LaMotte:
Do you remember what she shared with you that was meaningful to you where she self-disclosed?
Rebecca Alexander:
Yeah. She shared with me about her own relationship actually, that it wasn't easy, that she had a relationship with someone and they lived together, but that she actually spent time in Nicaragua volunteering there, remember Oakland, Berkeley, California. So she spent time and that one of the things that I've learned really over time that I never learned in my own upbringing was the importance of repair and that relationships are not just ... So many times we have something really uncomfortable that happens or something that offends us or we see people in our practice who do, and we never really talk about repair and how critical repair is and how uncomfortable it is. And so I think that early on, having her share a little bit more about what a real relationship is like, I had divorced parents was very helpful for me because I really didn't understand.
Elisabeth LaMotte:
Right. I mean, I really like the way Terry Real writes about it in his book that with an infant when you observe them, and this is not his research, but he writes about it beautifully in the book. The mother infant state is one of harmony, disharmony, repair, harmony, disharmony, repair. And in our society today, we expect so much harmony and we forget that disharmony and repair are essential to harmony. And just a clinician's willingness to show up imperfect in that way, or even to attempt to repair something, if there's a dysregulation or disharmony in the dynamic could be so deeply meaningful to someone who's never experienced that.
Rebecca Alexander:
Yeah. It's interesting. I had a therapist in my mid-twenties, mid to maybe late 20s who I worked with. And I've had many therapists throughout the years who really have impacted me with either the way that they've handled something or things that they've said. And I'll never forget that I went to a session. I had been fired from my first job working in a treatment program and I had so much shame. I thought that's it. Everybody knows that I'm a terrible clinician. I'm not cut out for this. The whole world knows, the whole community knows I am blacklisted, whatever. And the reality was is that I think that what I realized over time was that this program was a one size fits all approach to treating individuals. I cared too much. I was probably a bit unboundaried at the time. I had to learn.
Elisabeth LaMotte:
We all do. We all have to learn.
Rebecca Alexander:
But when that happened, I had so much shame, Elisabeth. Oh my gosh, I could not even tolerate it. So I'd seen this therapist and we'd worked together. And because I saw life and through the lens of I was always the one in the wrong or that I always made mistakes, I was inherently a bad person. I think there was a real underlying belief system that I had about my worth and who I was as a person. And I'll never forget that I came to a session and she said, Rebecca, I just wanted to touch upon something and how I responded last week because it didn't sit right with me. And I just wanted to apologize because ... And Elisabeth, I don't even remember. I don't think I even had remembered what she'd said, and it did not matter. What mattered was that A, that she had thought about the session or a way that she'd responded, and more importantly, that she had held herself accountable and that she was apologizing.
Now, I guess I don't know that I could even tolerate someone apologizing, but regardless, that is one of the most meaningful exchanges I've ever had. And it's also really informed my work as a psychotherapist that I think sometimes when we get pushback or we never want to think that we're doing anything or that we're saying anything that may be harmful or that may not be received the right way.
Elisabeth LaMotte:
And with that, it's not the content. As you said, there isn't even a memory of what it was. It's the process of someone circling back to attempt to repair a healthy repair.
Rebecca Alexander:
And the fact that she had even done that made me realize that, oh, maybe it is okay for me to be human as a therapist.
Elisabeth LaMotte:
I think today we have to be for the reasons you're describing in the way the world has changed. Are there ever therapy clients at this stage who come to work with you who do not know about your diagnosis?
Rebecca Alexander:
Well, here's the thing. If you Google Rebecca Alexander, there is a slew of information that comes up that says, Rebecca Alexander, deaf, blind, death, blind, death, blind. And because I do a lot of advocacy work, I am a different type of therapist and I understand this. And right now, we actually have a commercial through the Usher Syndrome Society, I'm one of their board directors. We have a commercial that we were very, very fortunate that Hulu and Disney+ took on pro bono, and they have been running it like crazy on these streaming networks and they ran during the Olympics and everyone has seen it. Now, everyone, okay. But clients of mine, ex, girlfriend of a client of mine, so many people have seen it. And this is something that more recently I've had to really sort of address, and now it's in the room. So do people not know?
I have to assume that they have Googled me, but I don't know. What I do generally when I meet with someone for the first time is I do tell them that I wear cochlear implants. Now, right now my hair is down so you can't see them, but if my hair is up, I'm holding my cochlear implant up. Where's the camera here? I'm holding my cookler implant up. When my hair is up, you can see them. And if you don't know what they are, you might wonder like, oh, does she have an assistive listening device on or is she listening to? Who knows? So I want to be very clear that I wear cochlear implants. If I don't hear you, I'm going to ask you to repeat yourself, but I want you to know that if you say something and I mishear it for any reason, it's not because I'm not listening, it's because I'm hearing impaired.
Elisabeth LaMotte:
I do just want to share that the way you wrote in your book about deciding to do the cochlear implant and how that is a metaphor for change and how even if something is uncomfortable or if something's unfamiliar, we're comfortable with it and change is scary. Change is scary and the way you pushed yourself On that decision, if you could share a little bit about that, I just thought that was so important.
Rebecca Alexander:
Yeah. I mean, I'm in a profession, a listening profession.
I'm also going blind. So before I go into describing what you just asked me, I have now, again, I was told by 30 I would be completely blind. I have probably somewhere between about five to 10 degrees of my central most vision. So I have what's known as donut vision actually, where I have this very outer periphery of vision where I can see my hands here and I can't see them, I can't see them, I can't see them, I see them. So it's hard to describe what that looks like. When I'm in a room and I scan so I know where things are, but if someone were to come right here, I wouldn't know that they had just entered the room.
Elisabeth LaMotte:
And it's so interesting because in this conversation, if I didn't know what we were talking about, I would never know. I would never know.
Rebecca Alexander:
Yeah. So to answer your question about getting cochlear implanted, it's interesting because I never really felt ... I live in the gray. My whole life is about living in the gray, which is incredibly uncomfortable. And so much of my work with the clients I work with is finding comfort and the discomfort, which is that gray area. I spent so much time trying to figure out what my identity was. I was okay, no longer sort of a fully hearing person, but I wasn't a deaf person either. And I was hard of hearing. And so you just kind of feel like you exist in this space where there isn't really a full community. Now there is much more of a community for people who are hard of hearing. But I learned sign language when I was in college and I immersed, I was a social worker at the school for the death in Brooklyn.
And I did all of these things to really try to immerse myself into this community because I actually never knew whether ... I didn't believe that I was ever going to have to be cochlear implanted. I didn't know what the trajectory of my hearing loss was going to look like. Nobody in my family had this. It was a rare recessive gene that was carried down, but we didn't know what my trajectory would look like. By the time my right ear became a candidate, now my right ear with a hearing aid, at the time that I was, this was in 2013, with a hearing aid, I had 28% discrimination. 28% of the time someone said something to me, I could accurately repeat back what was said. Without a hearing aid, it was 26%. Hearing aid was no longer doing me much good. What many people don't know about hearing loss is that it's not just losing the ability to hear, it's actually losing the ability to discriminate what you're hearing.
So it's sort of like Charlie Brown, wah, wah, wah, wah, wah, here on speaker. So oftentimes you hear people speaking, but you can't discriminate what they're saying. So I'd spent all of this time assimilating myself into the deaf community and really trying to develop a greater sense of identity. I knew that if I was going deaf and blind, what made me most uncomfortable while being deaf and blind. So that told me, that was information. Well, that's the very thing you need to expose yourself to. So when my hearing loss got to a point where I was told I would be a candidate, I decided to go through with the surgery. And this is not just a like, let's see how this goes. This is a drilling a hole into the side of your skull, snaking the electrodes into your electrode array and having to relearn how to hear digitally.
Elisabeth LaMotte:
A big, big decision.
Rebecca Alexander:
Yeah.
Elisabeth LaMotte:
Are you glad you did it?
Rebecca Alexander:
It's been life-changing. And I'm not someone who believes in miracles and I'm not wooy, but for me it was miraculous. Now, not just miraculous, you don't just get turned on and like, ta-da. Hearing is an auditory skill. And if you don't learn how to hear as a child or at a young age, then an adult who's deaf can't just go and get cochlear implanted because they won't be able to ever really develop the ability to discriminate sounds. And the other thing is, is that in the deaf community, it's a very controversial topic getting cochlear implant. And I did not want to just sort of announce to the world, "Ta-da, okay, thanks for all of the sign language and immersing me into your culture and helping me develop identity. I'm good now. I can go and get fixed."
Elisabeth LaMotte:
Right. That's why it's so important to continue to sign and to continue to do the trainings that you're doing. You are multi-multilingual through all of this, and I think such an important voice for many. What do you want us social workers and clinicians to know about working with clients who have disabilities that we may not know?
Rebecca Alexander:
One of the biggest pieces of working with a client with a disability, and I have many people who have come to me and they've said, "I've worked with so many therapists now who I spend my entire session educating them about whatever my condition is. " And so then it almost feels like, and I personally have had to do this. I have felt in the past like this therapist should be paying me because I feel like I am training them in how to work with someone with a disability. Now, we have all different ... We know about homophobia, we know about racism, we know about all of these, but there's another type of discrimination that is generally, it's usually implicit, but it's called ableism. And so oftentimes if you work with someone who may be queer or gay, they may have internalized homophobia. Many people with disabilities have internalized ableism, and it is so critical for therapists to understand and recognize their own ableist beliefs.
And part of how you know and can recognize your own ableist beliefs is what happens when you see someone on the street with a disability? Do you look at them and say and pity them? Do you look at them and say, "Oh man, God, that's got to be brutal." Do you look away because you don't want to have to engage with it because it makes you uncomfortable? Do you pity them in sign language? There's a sign where I'm taking my middle finger for those who are listening and not watching and putting my middle fingers out and my flat hands and making circles. And it's sort of like I pity you. I feel sorry for you. Sometimes when you're teasing someone about something, it's like, "Aw, I'm so sorry." But if you look at someone with pity or if you look at them and not see them as a whole person, you see them first as their disability, then you are reducing them to a disability.
But I have a disability and my disability is just one part of what makes me very dynamic. I have all of my family, Steph, I'm dealing with so many other parts of my life. So internalized ableism is something that people with disabilities often faced, but ableism is one of the critical pieces that social workers don't recognize that they are walking around with. We have limiting beliefs. Well, if someone uses a wheelchair, we have so many words now and phrases that we still use that we don't understand are antiquated. For instance, handicapped. When you say handicapped parking, we actually no longer say handicap.
Elisabeth LaMotte:
Here's another one, invalid.
Rebecca Alexander:
Invalid. That's another.
Elisabeth LaMotte:
Invalid?
Rebecca Alexander:
Right. And lame if you say that someone's lame. So there's so many different ... And listen, I am by no means ... I don't subscribe far left or far right. I think that both sides of the pendulum, this pendulum has swung too far in both directions, so I'm not super woke, but I do try to be sensitive. And so we don't say handicap and I'll tell you why. So you may say accessible parking, you may say disability parking, but we don't say handicap because historically when war veterans came back from war and they were unable to get jobs, they would sit on the street with their cap in hand begging for money, and that's how handicap came to be.
Yeah. So there are all of these different phrases and terms that we don't even realize that are ingrained in us because we learn them. And a person who uses a wheelchair is not confined to a wheelchair. That's something we also learned. People who use wheelchairs, that's how they get around. That's their legs. That's actually their ticket to autonomy and independence. So we say a person who uses a wheelchair or a wheelchair user. Now, all of this is just sort of semantics, but it's actually meaningful. It's important to educate yourself about these things and to recognize in the room, if you're working with someone with a disability, it's okay to acknowledge your lack of knowledge, to be sensitive to that.
Elisabeth LaMotte:
I think it's two things to acknowledge it, but also if I'm following, to take it upon oneself, to educate oneself about a particular diagnosis so that it is not only the client educating the therapist on that. Am I following that part correctly?
Rebecca Alexander:
Yeah, definitely. To do your own research. I think one of the other pieces, Elisabeth, that's really important is that sometimes if someone has a disability, you may say like, "Oh, I'm so sorry. I don't want to say the wrong thing." And we may not say something because we're worried about saying the wrong thing. I oftentimes say in my practice to clients, "It's not what you say, it's how you say it. " I want to be really mindful about the fact that you have a disability and I want to understand the language that you use around this. And if there's anything that would be important for me to know, be open, be curious about these things. But when we look at people and see them through the lens of limitation, it's so important to look at someone for what they can do, what they are capable of.
And yes, they are up against tremendous discrimination in all of the things that they're up against, as we all are in whatever the issues are that we face, but for you to be able to look at them through the lens of what they can do as opposed to what they can't, I think is really important.
Elisabeth LaMotte:
Well, Rebecca Alexander, on that note, I wish we had more time and I hope to continue this conversation over time. Thank you so much for joining Social Work Talks and thank you for the important work that you are doing.
Rebecca Alexander:
Thank you for having me, Elisabeth.