This weekend, Buffalo will celebrate Disability Pride Month at the Disability Pride Festival, held at Riverworks for the first time. The festival runs from 11 a.m. to 3 p.m. Saturday and includes a variety of local disabled entertainers, vendors and speakers, as well as food and a unity walk. It’s a chance to learn about disability culture, hear peoples’ stories and connect.
This week we share part of a recent interview with advocate BJ Stasio from our Voices of Disability Pride Series. Stasio is well known, not only for his advocacy across the state and country, but his program the Art of Advocacy, which encourages all disabled people to share their stories.
Extended Interview Transcript
This is a rush transcript created by a contractor and may be updated over time to be more accurate.
Emyle Watkins: Well, BJ, thank you for joining me here at Buffalo Toronto Public Media studios. It's great to have you here.
BJ Stasio: Great to be here.
Emyle Watkins: I want to kick this off, Voice of Disability Pride, of course we're talking about disability, but I know something you are big on is you're not just a person with a disability, and I know you have so many interests beyond that, even evidenced by the many tattoos you have. Can you tell me a little bit about outside of your disability advocacy, what do you enjoy? Who is BJ Stasio outside of his advocacy work?
BJ Stasio: Well, I enjoy just being in the community and being seen and feeling like I belong somewhere other than in the advocacy arena. And my community around me makes me feel that way. And when I'm not welcomed or not included, I feel it. And it's not intentional, could just be the staring at the person in the wheelchair because I'm bigger than most. But when the community welcomes me, I feel like I belong somewhere and I'm grateful for that.
Emyle Watkins: What are some of those spaces you felt welcome in? I know you had a racing organization, correct?
BJ Stasio: Yes. The running organization welcomed Buffalo Racing, it was an organization that we involved people with disabilities and we would have runners push them and design push chairs, and they had different adaptations for different size people so they could enjoy the race. For me, it was never about being a part of it, it was just being present. I got a few participation medals at a few races and I sent it back and said, I don't need the participation medals, just being present and not being invisible was enough for me.
Emyle Watkins: I know though that also being visible has its challenges, right? Because of the way our society views people with disabilities. I know even the times that I wear my knee braces, the reactions people have to me are just so strange and awkward. People walking up in front of you and being like, what happened to you? And it's like, I mean, how do you deal with that, the negative impacts of visibility or people's negative attitudes when they see you?
BJ Stasio: Well, I kind of flip it and say something very important to me, and I hope the audience understands from once this comes, that when what happened to me, I always say, God chose me to be this way. And it stops the, do you feel bad about it? Because there is no answer once you say God chose me to be this way. There is no follow up to, well, does it bother you? How can something bother me that I never knew anything different. I never knew what it was like to walk or have a knee brace, I've always used a wheelchair for mobility in one shape or another. So God chose me to be this way and God has put me on his life's mission for me.
Emyle Watkins: Well, and I know faith is an important part of your life as well, and you found a great church. I don't know, could you talk a little bit about that aspect of your life? Because I think also some people with disabilities have also had very negative experiences in religious spaces. How did you find a space that felt welcoming and accepting?
BJ Stasio: Well, the space that I found welcoming and accepting, just let me find my way because all I wanted to do was have a relationship with God because God kind of tells me what to do, when to do it. And like I was telling somebody this morning, we were having an early lunch, they asked me, do people often look at you funny when you say God talks to you? And I say, yes, that's what I want. I want them to look at me funny. How do you know God's talking to you? Because I could never come up with these ideas myself, it's always been his vision for me and his goal for me of what he wants to do. Now, I'm not saying I listen all the time because I don't. I'm stubborn. I want things quicker than most, not only for myself, but for those who I know who are going through the same thing.
Emyle Watkins: And how do you find that patience? Because I think change has been so slow for our community, and so many people expect people with disabilities to just be happy with what we've got, and change takes time. But how do you stay patient through all of all these slowdowns and blockages and attitudes?
BJ Stasio: To be honest, Emyle, and thank you for asking that question, I don't stay patient. I just have to keep pushing and keep getting the message out there because one story is not enough. My story is not enough. Your story matter too. It might not be as polished as mine, because I've had years of practice, your story is your story and it's unique to you and it matters most. So please get out there and tell the story. Don't wait for the leaders of the disability community to tell their story to make it your story because your story is unique to you. Yes, and I can now say I am a leader in the disability community, and it took me a long time to admit that, but now I see I am and I'm getting used to the new skin, but it's taking some time.
Emyle Watkins: That's a great segue into my next question, and this is something I like to ask everyone. If you could give advice to a younger you or another person with a disability just getting started on their self-advocacy journey, what would you tell them?
BJ Stasio: Give yourself some grace. There will be times when you're not going to be heard, but that doesn't mean you give up because the time you are heard could change something for you or for somebody else you've never met. Or maybe some words I'm saying today will wake somebody up and say, if he can do it, I can do it. And that's what I want. That's what want the younger generation to know. Because even after I'm gone I want the younger generation to take what I've taught them through the many ways I've learned things to just carry through with their own advocacy. There is no absolute right way to do advocacy. Advocacy is unique to everybody. But the thing that is unique, it's your advocacy and your story belongs to you. And there's not a polished way to tell your story. And yes, there are some emotions involved, but I've learned to kind of not get too wound up in the emotion and just tell the story from my point of view and maybe sprinkle in some stories of people who I know. So it doesn't seem like it's all about me because my advocacy is not all about me. It's about all of us together as one community.
Emyle Watkins: And what do you wish non-disabled people understood about our community?
BJ Stasio: Those with disabilities aren't going anywhere. And we belong in the communities in which we live because that's why institutions like Willowbrook and the institution in West Seneca have closed. So we could have a place to belong and call a community of our own. And we are a part of the larger community. So please welcome us because we have a lot to offer the community, and I appreciate those who have welcomed me in the community in which I live. So I want to take the opportunity to say thank you.
Emyle Watkins: And this is kind of my popcorn question. Who do you look up to or admire in our community specifically in the disability community?
BJ Stasio: Well, there are many for me, but my top three are Chester Finn, an advocate from Western New York who works with me in Albany. Judy Heumann, the national advocate who fought for 504. And Bernard Carabello, the founder of the Self-Advocacy Association.
Emyle Watkins: And he's a survivor of Willowbrook, correct?
BJ Stasio: Correct. A survivor of Willowbrook. So we owe all those advocacy legends a dead of thanks, and I want to say thank you for teaching me a lot of stuff that I now want to pass on to the next generation.
Emyle Watkins: Something that kind of just struck me is a lot of your mentors have been these very significant leaders in the disability community. What would you say if there's someone out there who's like, I really want to find a mentor who's also a disability advocate, but they feel like they're just too big or too important for someone like me to talk to?
BJ Stasio: Nobody's too big and too important. We're all human beings. We all have a mission that drives us. We all have something that drives us to want to change. The advocates I spoke about in myself are striving for change. And change doesn't happen without all of us. So I implore you if you know an advocate who you look up to, even if it might be me, come up to me and have a conversation, I'd be glad to have a conversation with you about what it takes to be an advocate. And all it takes is the courage to speak up, speak out, and create change.
Emyle Watkins: And lastly, is there anything you've learned in your career or your life that sticks with you, maybe a skill or idea that you carry with you every day or a value?
BJ Stasio: This is an odd response, so forgive me. Just to never take no at face value. There's always an opportunity to turn a no into a yes. And if you turn a no into a possibility of a future conversation, that's a victory. So take it and run with it. And a no can always become a yes. A no is always a first reaction from somebody because it was never brought up before. And maybe you've opened somebody's eyes by a saying, why? Explain to me why you said no. You have a right to know the answer of why it's no. You don't have to take no at face value.
Emyle Watkins: I love that. Well, thank you so much for taking the time to chat with me today, BJ.
BJ Stasio: It's my pleasure. Thank you.
