This week we bring back our series Voices of Disability Pride, which shares the perspectives and advice of local leaders and advocates in the disability community. Recently, BTPM NPR's Emyle Watkins sat down with advocate Holly Nidell, who shared her advice on living a life of purpose, sharing your story openly and becoming more involved.
TRANSCRIPT (FULL INTERVIEW)
This is a rush transcript provided by a contractor and may be updated over time to be more accurate.
Emyle Watkins: Holly, thank you so much for joining me here on BTPM NPR.
Holly Nidell: Thank you for having me, Emyle. It's finally nice to get together. We've been wanting to do this now for over what, a year?
Emyle Watkins: Yeah. And the thing that strikes me is, every time I see you, you're at a different event for the disability community. And I don't know, I was thinking about that today. Why do you choose to get so involved with every disability community event? Because I have noticed some people will strongly identify with the group of people with disabilities who are the most similar to them.
People with spina bifida will do a lot of spina bifida events. People with autism will do a lot of events for people with autism. You just show up and support everyone. You're like that Swiss Army Knife of the local disability community. Can you talk a little bit about why you get involved in so many different things?
Holly Nidell: Well, thank you for thinking of me that way, first of all. I am grateful for that.
What got me involved, just to begin with, was work. Because where I work, first of all, working in transportation, we service people with disabilities. And we also want to participate in local events. And when I first started, it was COVID. When COVID became less and we were reintroducing ourselves into the community, where I worked started participating, again, in, for example, Disability Pride.
I had the opportunity to take someone else's place in being that person at the festival. So, that is something that just resonated deeply with me, that it happened to be the DD Day event where I had the opportunity to participate in this event as well. And then, it seems to be every event after that. The only way I can explain why or how is, that spark started with work and it just... I don't know, I just really enjoy the people that I connect with.
And the more that I'm able to do it, and the more that my employer allows me to do it, and the more face I can have in the community for people with disabilities and for where I work, where we can show that we truly do support people with disabilities, I'm grateful for the opportunity.
Emyle Watkins: And I know that your company has been great at just lifting you up and giving you these opportunities, and not pigeonholing you into only doing that. But I know that some disabled people worry that if they start advocating for disabled people in their workplace, they'll only be seen as the disabled person in their workplace. Do you have any advice to them about how to be that advocate in your workplace and also build that respect for disabled people in a workplace?
Holly Nidell: That's a really good question. Thank you. I believe everything has to do with communication, how we communicate with others, whether it be in the community or with people at work. And the more we want to get people involved at work, communicate how we are as a person with a disability. And the only thing I can do is, give you an example of how it has worked for me, for myself, is by talking to people about my disability.
What initially happened? What was my life before having a disability? And what it does is, it really tends to open up people's eyes. Because for me and the people that I work with, we enjoy one another's company. So, when they see that other side of what happened, then they also want to be a part of it. I know it may sound strange, but they want to be a part of it.
So, if a person, a younger person, has that ability to open up a dialogue with their employer, or people that they work with, to help them understand from their perspective, to have them look through a different lens, it may not, as you described in the beginning, for potentially an employer to be looking at a disabled person, is pigeonholing them, unfortunately.
Emyle Watkins: That makes a lot of sense. I think that's great advice. I know I'm part of the DEI committee at my company, and as I've spoken up about my experiences, it's actually led to other people speaking out and being like, "I have this disability, I have that one." And it's not just me. It's not like you just become that one person.
Holly Nidell: Right.
Emyle Watkins: Right? And you mentioned your journey with disability. I was wondering if you have any advice for coping with change because I know that you, if I'm correct, have an acquired disability. And that, I'm guessing, that wasn't something you expected for your life. So, do you have any advice for people who are coping with a big change like that?
Holly Nidell: That's a great question, and it's also a very challenging question because all of us are different. So, with what happened to me, being 33 and having what I thought was the life ahead of me change in literally four days, for me, it's about that inner strength. It's the inner strength and the belief that there is better days to come. And to believe that even though you see this little pinhole of light at the end, where all you see is darkness and all you can think about, maybe the life that you left behind, and that is fleeting in the background, focus on that little pinhole of light.
And also, your support group. Whether if it's just a recently acquired disability and you're still going through different forms of therapy, rely on your therapy teams, your family. With my family, they were so instrumental in helping me. And also, what I call my sole tribe of friends, who... My wonderful friend, Courtney, who absolutely was my rock while I was in the hospital, when I got out of the hospital, and really helped to get me to where I am today, along with my friend, Maria, and several other individuals.
But then, once you move on and you still need that support, it's those other individuals that come into your life that you care about. And that is what makes the biggest help and the biggest ability to change, and have the best chances of having the best outcome when it comes to living a life of purpose once again.
Emyle Watkins: Can you talk a little bit about where you find joy? You mentioned looking for those little sources of light. And I feel like the one thing people don't think about is disabled joy and how there are these really joyful experiences that come with being part of the disability community. What have some of those experiences been for you?
Holly Nidell: Many of the joys that I have been able to either reacquire, that maybe I wouldn't have been able to do had I not looked at different resources that were available, but I am such an avid beach-goer. I love sunsets. I love all of that. And when you can have a mat, a track that goes all the way down to the water, and I'm specifically speaking of Hamburg Beach, or there's a beach out in Erie, Pennsylvania. And there's one down in Virginia. They're all over the place. But if you have the ability to do what you once did before, or something that you think you're passionate and you have that resource, that brings me a ton of joy.
I used to be an avid hiker. I mean hiking, cross-country skiing, all of that. And when I lost the use of my legs, I'm like, "Now, what am I going to do with my..." But now, parks are ADA-compliant. And I, recently... It was last year? I went out to Ithaca, Corning area, to Taughannock Falls, and that path was accessible. And the amount of joy that I could do it by myself, and it just... That's joy for me. Or when you have the ability to go to work, and there are those different laws that are in place to help people.
I, when I lost the use of my legs, I'm like, "Literally, what am I going to do now?" But it's that inner strength, that drive to still... I can still be something in this world. And I can still make a difference, and I still can help make change. That, to me, was a driving force for me.
Emyle Watkins: And I think these are the kind of things that a lot of non-disabled people don't understand or know about our community. And I'm wondering, what do you wish non-disabled people knew about our community?
Holly Nidell: I think the biggest thing for me that I wish people who are not familiar with the disabled community is, number one, please never pass judgment. That's probably one of the biggest things. Try to understand who we are, and understand that we would like to be active participants in the community that we reside in, or wherever we go. Okay, wherever we live, wherever we move to, but wherever our home base is. And that, even though we have a disability, there are different perspectives that we can also bring to the community that maybe other people haven't thought of. But also, I would like to highlight the fact, again, just don't judge.
The biggest thing that I wish people wouldn't do is that they wouldn't judge, number one, anyone, but people with a disability. Because people who have a disability really just want to be active participants in society. We want to feel like we belong. If we could choose anything, I don't necessarily think that we would choose to be disabled. I can't speak for everyone, but it's... This is a tough one.
Emyle Watkins: Well, also, I don't know about you, but I think sometimes people look at us and assume our life is less than, or not as good as, other people. And a lot of those barriers that we're facing really just are ones that are created and not always because of our bodies or our minds, but just the way the world is built because of that judgment.
Holly Nidell: I do agree with that. There are times where I often wonder if... I don't necessarily want to say pity, but you do have individuals, I know, who pity and do think less. But the world is changing, and I know that people are changing for the better. But I hope that people continue to not judge. That's my biggest hope.
Emyle Watkins: I think all this also goes back to what you originally said about communication. The more that non-disabled people communicate with us, the less judgment there will be.
Holly Nidell: That is true. I think, yeah, going back to the beginning of the interview, when I had spoke about the more we communicate with individuals, the better they understand our situations, if they are open to it. And I think that the more conversations that we have in the community could only strengthen our perspective in someone else's eye.
But the other thing is, too, when I look at it, I'm also the type of person that I'm going to do my own thing anyways, regardless how you feel about me or not. Because I believe I belong here, just as much as the next person. And it's that strength and inner willingness to fight, but that inner willingness, that strength inside of me.
Emyle Watkins: Who do you look up to or admire in our community?
Holly Nidell: I love that question. I really do. So, the people I looked up to in our community are the Rick Banners of the world, the Sophia Roberts of the world, Mike Rogers, BJ Stasio, Mitch Nowakowskis of the world. Whether disabled or not, how do they present themselves in the world? How are they viewed in their communities, and what do they do for their communities? And as far as people with disabilities and people with non-disabilities, and those specific individuals help their community and the people with disabilities.
And also, Karen Keys, Alan Venesky, a lot of the people on the DD Day Committee. People at Western New York Independent Living. You have Tracy LeBlanc. You have Stephanie Orlando. You have Todd Vaarwerk. When you look at the people that have been in this community doing, for example, events like Disability Pride, DD Day, and you look at their... They are like, I don't want to say figureheads, but they are like the people that help make this happen that are really... They care so much about...
Number one, they care about people. Number two, they care about what's right, and they care about doing right. And that's something that hits my heart like you would not believe. And Emyle, like yourself. No, I'm not just saying this because you're my interviewer, but no, in all honesty. And Frank Camarata. The list could go on and on because I have truly met some absolutely wonderful people in a short time. I've only lived here five years? Four years? Five years. And two of those were through COVID.
So, I'm truly grateful for that question, and for you, and for everybody that I've rattled off. So, yeah, there's so many wonderful people.
Emyle Watkins: Well, thank you. And I'm grateful for you, and I'm grateful for this community, too. I think we have one of the strongest disability advocacy communities that I've heard of in the country. And I talk to other disabled reporters and disability reporters and health reporters, and we do have such a strong group of advocates here.
And so, I'd love to end on a question about your advice for future advocates. Is there anything that you've learned in your career or your advocacy that sticks with you? Maybe a skill or an idea, or a value that you keep with you and hold with you every day?
Holly Nidell: Good question. So, there's a couple things. Learn your audience per se. Learn the group of people you want to work with, but educate yourself. To be a good advocate, I feel you have to educate yourself on what you want to advocate for. And then, it is a matter of your communication. How well do you communicate with others? And I feel communication, like in anything, is one of our most powerful resources. And how well we do that with each other, and also with people we don't know, can really be the difference between something turning out positively or something turning out negatively. And learn to laugh.
Okay. Advocacy at times can be challenging, but if you are with common-minded individuals who believe in what you believe in and understand, it can't be all work. We have to be able to step back with a group of each other and enjoy each other's presence and go have fun, laugh, but then understand when it's time to get back to work, too. So, those are probably the three biggest things right off the top of my head that really I can think of.
Emyle Watkins: That's a great outlook for the day and a great way to approach every day, I think. And Holly, thank you so much for taking the time to chat with me.
Holly Nidell: Thank you.
TRANSCRIPT (ON AIR VERSION)
This is a rush transcript provided by a contractor and may be updated over time to be more accurate.
Emyle Watkins: Hi, I am Emyle Watkins and this is the Disabilities Beat. This week I'm excited to bring back our series Voices of Disability Pride, which shares the perspectives and advice of local leaders and advocates in the disability community. Recently I sat down with advocate Holly Nidell, who shared her advice on living a life of purpose, sharing your story openly and becoming more involved. On air, I'm going to share a portion of this conversation where I asked Nidell for her advice for young disabled people who may be timid about advocating for people with disabilities at work and how she's coped with change. But you can listen to the entire conversation on btpm.org.
Holly Nidell: I believe everything has to do with communication, how we communicate with others, whether it be in the community or with people at work. And the more we want to get people involved at work, communicate how we are as a person with a disability. And the only thing I could do is give you an example of how it has worked for me, for myself, is by talking to people about my disability, what initially happened, what was my life before having a disability. And what it does is it really tends to open up people's eyes because, for me and the people that I work with, we enjoy one another's company. So when they see that other side of what happened, then they also want to be a part of it. I know it may sound strange, but they want to be a part of it.
So if a younger person, has that ability to open up a dialogue with their employer or people that they work with to help them understand from their perspective, to have them look through a different lens, it may not, as you described in the beginning, for potentially an employer to be looking at a disabled person is pigeonholing them, unfortunately.
Emyle Watkins: You mentioned your journey with disability. I was wondering if you have any advice for coping with change, because I know that you, if I'm correct, have an acquired disability and that I'm guessing that wasn't something you expected for your life. So do you have any advice for people who are coping with a big change like that?
Holly Nidell: That's a great question, and it's also a very challenging question because all of us are different. So with what happened to me, being 33 and having what I thought was a life ahead of me, changed in literally four days. For me it's about that inner strength, and it's the inner strength and the belief that there is better days to come and to believe that even though you see this little pinhole of light at the end, where all you see is darkness and all you can think about maybe the life that you left behind and that is fleeting in the background, focus on that little pinhole of light. And also your support group, whether it is if it is just a recently acquired disability and you're still going through different forms of therapy, rely on your therapy teams, your family.
With my family, they were so instrumental in helping me and also, what I call, my soul tribe of friends, who... My wonderful friend, Courtney, who absolutely was my rock while I was in the hospital, when I got out of the hospital, and really helped to get me to where I am today along with my friend, Maria, and several other individuals. But then once you move on and you still need that support, it's those other individuals that come into your life that you care about. And that is what makes the biggest help and the biggest ability to change and have the best chances of having the best outcome when it comes to living a life of purpose once again.
Emyle Watkins: You've been listening to the Disabilities Beat from Buffalo Toronto Public Media. You can listen to the Disabilities Beat segment on demand, view a transcript in plain language description for every episode on our website, at btpm.org. I'm Emyle Watkins. Thanks for listening.
