People with disabilities and their families are sometimes told what their potential is to do certain activities, to go to school, work, or even how long they’ll live. But how much do these expectations influence reality? What if we left them behind?
This week, we continue our series “Voices of Disability Pride” with local advocate Gwen Squire. She discusses with WBFO’s Emyle Watkins how a willingness to try, even if that means failing, has been central to her own journey of self-advocacy. Squire tells her story of going from growing up in a time and an institution where people with disabilities weren’t expected to do much with their lives, to present-day, where she is helping people see their potential and have the personal autonomy to decide what their lives can be.
Squire is a part-time advocate support professional for People, Inc and co-founder of Outside the Box Associates, an organization focused on rethinking disability advocacy and inclusion.
This interview has been edited for length and clarity.
PLAIN LANGUAGE DESCRIPTION: Gwen Squire and WBFO's Emyle Watkins discuss the importance of self-advocacy for people with disabilities. Gwen shares her personal journey of advocating for her rights and encourages young and newly disabled people to speak up for themselves. Gwen emphasizes the value of being willing to try, learning from failures, and recognizing your own potential.
TRANSCRIPT
Emyle Watkins: Hi, I am Emyle Watkins and this is the WBFO Disabilities Beat.
This week we continue our series Voices of Disability Pride with local advocate Gwen Squire.
Squire is a part-time advocate support professional for People, Inc. and founder of Outside the Box Associates, an organization focused on rethinking disability advocacy and inclusion.
This interview has been edited for length and clarity.
Emyle Watkins: Well, Gwen, thanks so much for joining me on WBFO.
Gwen Squire: Yeah, thank you for having me here.
Emyle Watkins: I'd like to start by asking you why you became interested in disability advocacy and hear a little bit about your career?
Gwen Squire: I guess I started when I was a kid. I lived in an institution back in the sixties. I was placed out there until 1977, and I saw things and heard things, and I would talk to the director about it if I thought it was wrong, and I didn't realize it back then, but I was advocating for people that couldn't advocate for themselves.
So I remember thinking to myself, even when I was 10, when I get older, I'm not going to let things like this go on. People getting hit or having their hair pulled because they talked back or for whatever reason, because not all the staff were like that, of course, but there were a few staff that were not nice, and I just remember thinking, I'm not going to let that happen for people who can't talk. I'm going to talk more of them if I have to.
Emyle Watkins: That's incredible to hear. And I imagine that had to be a really difficult place to grow up.
Gwen Squire: Yes, it was.
Emyle Watkins: And I know that for much of your career, from what I've read, it's focused on self-advocacy and self-determination. Can you tell me a little bit more about why that's important for people with disabilities to understand these movements and skills?
Gwen Squire: I think especially for self-advocacy, you're advocating for yourself and it's really important to let people know, for myself, I'm just like everybody else. In spite of the fact that I have a disability. I may do things differently, but I can still do those things. Doctors told my biological parents, well, she'll never make it past a certain age. It was like 12. First, it was one, then 8, then 12. And then she's never going to go to high school. She's never going to do go to her prom. She's not going to learn how to drive.
I've done all those things and I think if I had listened to the negative stuff being told, I probably would've believed it, but I thought to myself, I want to prove to myself too that I can do those things just like anybody else could do, and the wheelchair is not going to stop me. Having a surgery isn't going to stop me.
Emyle Watkins: Do you think the expectations of people with disabilities have changed?
Gwen Squire: I think it's gotten better, definitely since I was born, yeah, since the '60s. I think sometimes people, doctors are still predicting when someone may or may not die or what they can and cannot do. But I think that if parents keep an open mind and say to themselves, "Well, if I listen to the doctors right now or so-and-so my kid might not achieve anything, but if I let my kid kind of go and I don't put a label on them right away of being slow or whatever, let's try them in a classroom first and let's see how they do."
I think if you do it that way, you can give your kid, even though they've got a disability, you can give them what they need and to try. Never be afraid to try.
Emyle Watkins: And what would your advice be to a younger Gwen or someone else with a disability who's just getting started on their own journey of advocating like you did when you were 10?
Gwen Squire: Probably to never give up on your dreams and just never to give up on what you believe in. And to always speak up for people, if they can't speak up for themselves or if you are afraid to speak up for yourself, just take that chance and just go ahead and jump. If you fail at it, then you fail at it. At least you'll learn from the failure, what did I do wrong? What did I say wrong? Did I approach it wrong? So I would tell my younger self to just keep trying.
Emyle Watkins: Have there been certain points in your career where you took that jump? You did something where you weren't sure how it was going to turn out and it turned out better than you expected?
Gwen Squire: I guess going to college is one of them. I had a hard time in high school because I had been mainstreamed into all regular classes by the ninth grade, and that kind of freaked me out a little bit.
I was terrible at math and I felt like I was stupid at math, but come to find out years later that people with my disability, which is spina bifida, having difficulty either doing math or doing reading, they've done research on it and studies, they found that out, and I wish I had known that back then. I would've said, "Oh, that's my issue." It's not that I'm stupid, I just take a little bit longer learning certain things.
Emyle Watkins: Speaking of your education, you end up getting a master's [degree] in rehabilitation, right?
Gwen Squire: Yes, I do. And it's rehabilitation. I got it in 2001. I did it in two years, so I was very proud of myself for that because years, in the past, even through high school, junior high and all that, I usually ended up having at least one surgery where I was out for weeks and I had to play catch up. So that didn't exactly help.
I did have surgery my final year of college in 2000 actually, that year in 2000, 2001, and I ended up being out of school for a week, but then I went right back to school and I kind of just jumped right back in and caught up with everything, and I was just really proud of myself of the fact that I graduated on time with my friends and coworkers.
Emyle Watkins: That's awesome.
Gwen Squire: Colleagues, I should say.
Emyle Watkins: Awesome, yeah.
Gwen Squire: Yeah.
Emyle Watkins: Tell me a little bit more about what that degree allowed you to do with your career?
Gwen Squire: I always wanted to work with people with disabilities and teach them that things may be tough for you because you've got a disability, but you can do anything you've set your mind to.
So the degree definitely helped me get my foot in the door in a lot of places, like I've done, they call themselves ACCESS-VR now. It used to be called VESID when I went and gotten aid for school and take classes and stuff like that, but I actually worked for them for the summer, and I think it's because I did an internship with them for school, for class.
Emyle Watkins: So, it sounds like your degree helped you get in the door in more places.
Gwen Squire: Yes.
Emyle Watkins: I think a lot of times it seems like people with disabilities have to work twice as hard to have the same opportunities as someone else.
Gwen Squire: Oh we do, yeah, I think so.
Emyle Watkins: Do you feel like people with disabilities often have to get degrees just to do things that people without disabilities can do?
Gwen Squire: Can do, yes. I've spoken to that with Mike [Rogers] and Alex [Jusko] and everything. We've talked about how we feel like because we have disabilities, we have to prove ourselves a lot more. We have to work harder in school, we have to do the internships that everybody else has had to do, but we had to do it. We had to prove that we could be there just as well, be on site and do the work that everybody else can do. Yeah, I feel like that a lot of times.
Emyle Watkins: And kind of bouncing off of that, what do you wish non-disabled people understood about our community and understood about us?
Gwen Squire: I wish they understood that just because we do have a certain disability it doesn't mean that we are not people that we don't think like other people do, that we can't do the things that they can do, but just differently. We do it differently.
Emyle Watkins: Is there someone you look up to or admire in the disability community?
Gwen Squire: My adopted mom, I looked up to her big time. She was from Germany and she went through World War II and she lost a sister because of that and because they were bombed out. And she came over here in 1952, I think it was '51, '52, and she went through a lot of things in her life and she overcame those things.
So she was somebody I really looked up to a lot. And then I have my staff, Sally. I look up to her too. She's been with me for I think about 10 years now. She was my family care liaison first. She's gone through some stuff in her lifetime too that we've shared, and she's overcome those things too. And I just think it's very cool.
Emyle Watkins: That's great. And lastly, is there anything that you've learned in your career that sticks with you? Maybe a skill or an idea that you carry with you every day?
Gwen Squire: If I were to say that I touched on what I said earlier about making mistakes and it's okay to fail. I've learned that it's not a terrible thing to be a failure at something. You can fail at something and learn from it and just improve off of it maybe the next time, or not. Maybe you have to let it go, but that it's okay to do that.
Emyle Watkins: And to fail is to be human too.
Gwen Squire: Yeah.
Emyle Watkins: Absolutely. Well, thank you so much, Gwen. I appreciate you chatting with me today.
Gwen Squire: Thank you for having me.
Emyle Watkins: You can listen to the Disabilities Beat segment on-demand, view a transcript, and plain language description for every episode on our website at wbfo.org. I'm Emyle Watkins. Thanks for listening.
