By Holden Green
Freelance Breaking News Reporter, The Daily Herald
Data Journalism M.S. Student, Columbia University
PART 2
This is part two of Holden Green’s conversation with Avery Roberts and Kelly Berger. Roberts and Berger, disability advocates and two people living with a rare, neuro-muscular disease, spoke on a wide range of topics, including their lives, their advocacy work and how they find community. In this part, Roberts and Berger talk about their advocacy work and what they do for fun outside of advocacy.
Check out part one of the conversation, in which Roberts and Berger discussed their personal journeys and resilience strategies.
The transcript has been edited slightly from the original to improve clarity and remove some non-essential filler words.
H: You both mentioned earlier access and improving access being one of your missions. I think it’s interesting and inspiring for people who are dealing with this condition to want to then go out and make the world better for other people dealing with the same condition. I’m curious how it’s been engaging in advocacy, what sorts of work you’ve done, and what you push for when you advocate?
A: Yeah, Kelly and I also always say there’s the power of allyship. I think a lot of people think that you have to live with a certain condition to be an ally and really know. We welcome everybody, we need everybody, you know, in this fight. And just like Kelly was saying, power in numbers and power in the collective, and just we encourage it and we need it. But also just the power of the lived experience as well; that’s something that Kelly and I talk about a lot. And that kind of also goes with our work on Capitol Hill and advocating to our legislators and their offices. But also, with that, we realize that if we wanted to see real change in our world, and in our society, we needed to speak up. Because there are barriers and obstacles in our everyday lives that I’m sure people who aren’t using a wheelchair don’t realize. You know, like not being able to get into a restaurant or something, because there are stairs, that’s obviously a barrier for us. And so we do a lot of work in terms of access and federal funding for research. Medicaid is a huge one, Supplemental Security Income is another one that’s huge – and within all these are their own issues. And so we try to really stay up to date with policy and connecting that public policy to the rare disease community and it’s needs. And so we found that we need to raise our voices, and our community needs to raise its voice, to amplify our need and so that we can humanize this public policy to bring it to the forefront for our legislators. So, Kelly please talk more about that.
K: Yeah no, I think me and Avery would like to leave the world better than I found it, so like, to help the people that come after us is something that I would strive to do. Like Avery mentioned, a lot of these things are just such outdated policies and limitations that hold the disability community in poverty, like we’re stuck. So the marriage penalty law; we marry someone we could lose our benefits. Or the SSI asset limits; you can only have $2,000 to your name to stay within those limits and receive SSI. So, there’s just these systematic barriers that are so outdated, so archaic. And we’re tired and we want a better future for not only ourselves but for others. And yeah, that’s what’s motivated me to try to enact these changes and just rally together to really open people’s eyes that this is still the world that we’re living in. And, unfortunately not a lot of wins lately, but hopefully that’ll shift and we get back to more equality and better future accommodations for people with disabilities.
H: Something you’ve talked about as well is access to treatment and care. What does that look like with Collagen 6 and CMD specifically? What is the hope for the future in that area, and do advocacy and federal funding have the potential to change it?
A: Yeah, especially for our community it definitely does. So, to date there is no treatment or cure for CMD. And 95% of rare diseases still lack an FDA-approved treatment. And so federal funding for agencies like the FDA and the National Institutes of Health is huge. It’s key and crucial for our community as we’re still not at clinical trials. And so those agencies are really key as we get ready for clinical trials. That’s where kind of our main hub of neuro-muscular researchers and CMD researchers are. So those agencies are really key as we get towards clinical trials as well as during, with research and everything. A lot with research, also, is diversity. And so, since CMD is a progressive disorder, especially as we’re gearing up for clinical trial readiness and stuff like that, we’re trying to make sure that our researchers understand that everybody is different, and so we can’t really make a one-size-fits-all kind of model in terms of treatment. We need to really listen to affected individuals to hear what they want. Because we hear all the time – all the time – that our clinicians are shocked to hear what our affected individuals want in terms of treatment. We really push for that, as well as just kind of setting the stage for a cure and what it means for our community. A lot of people don’t realize that, at least for CMD, a cure doesn’t really mean exactly a cure like people would think about it. We can’t really regain the muscle that we’ve lost, and so a treatment could, you know, stop progression and maybe gain back some strength and some muscle, but the people who can’t really walk right now; it’s not like all of a sudden one day everyone’s going to be able to magically walk. Like, I hate to say it like that, but I think we really need to set expectations for what it means. And so federal funding is a huge part of giving those federal agencies, like the NIH and FDA, what they need to continue forward towards clinical trials for rare diseases like CMD and, you know, cure and treatment. Right, Kelly?
K: Yeah! I would just say eliminating that red tape, that we know is there with a lot of the treatments, so that when we are ready it’s quick and it’s streamlined. There’s just a lot of different protocols and things that delay being approved and being able to get patient access and insurance approvals. So just trying to stay on top of current legislation that enables us to streamline that and not have that red tape be the reason that we’re holding back from being able to help treat the CMD community.
H: You’ve also talked today about your hobbies outside of pushing for access and change. What do you both find joy in outside of advocacy? What do you like to do for fun?
K: Yeah, I’ll go first! I like don’t shut up about music and live music; I love concerts and festivals. A lot of my travel revolves around shows and different music events. That’s something that I find is kind of my therapy; just going to shows and being around people that are singing the same songs and just having that free moment together. I don’t know, it’s just something I’ve always been drawn to, and that feeling – that concert high – that you get from experiencing live music is just something that I really enjoy. So that’s my biggest hobby and passion for sure outside of the work I do.
A: Mine’s a little bit similar and yet not similar at the same time. Like I mentioned, being a New Yorker and a dancer–
K: I feel like you should mention theater! I feel like you’re into theater.
A: Yeah, I ‘m a huge Broadway showgoer, as Kelly knows, and so that’s a huge thing for me. And I think it kind of ties back to my dance roots of just, you know, access in the industry. Because a lot of Broadway theaters are really old, obviously, and so also the ADA is supposed to kind of be the bare minimum, and the ADA only covers public spaced. And so a lot of private spaces, like, you know, Broadway theaters or backstage areas, are very inaccessible. The audience theater experience is also something I’m really passionate about. And so I feel like dance and theater and Broadway is kind of tied together for me, just like Kelly’s concert-going. But yeah, just really passionate about the entertainment industry and media and representation. Something that I explore a lot is disability inclusion done right, and what does that mean to our community. Because I think a lot of people, you know, don’t really think about it a lot or a lot of people have different interpretations of what that means. And just that’s just something I explore a lot and within our community, just because access is usually an afterthought, or, even worse, a burden for some. And it’s usually just checking a box off a list. So yeah, I would say my hobbies are kind of my work at the same time, which I think a lot of people don’t get to say, but I’m really grateful that I can say that.
H: And Avery, with your performance at Radio City Music Hall; how did that feel and how was that process to perform on that stage?
A: Yeah! Very surreal, not only for me and my dance career, but also just our community in general, just because of that milestone. I think a lot of people would think that these high-profile experiences are the most accommodating, but, actually, they’re often the ones that need the most education. And so I would say that, as much as it was a very surreal experience, it was definitely eye opening to how far we’ve come in the industry in terms of access and support, but also how far we have to go. And that I also need to speak up and share that kind of stuff and just point it out in our industry, so that the people who come after me feel like, one, that they can come after me, and two, that they’re supported and they have the access that they need. And so, it was a very true awakening for me, as well as just an incredible moment. Not only for me but also our community, as around 5,000 people were able to witness this milestone. So that was really surreal, and I’ll never forget that night. But also, it was just a very empowering moment. Ever since then that’s really what has sparked my drive. And it goes to show again, like, lived experience; that’s kind of what has really fueled my passion for what I do, just from my own experiences.
H: And Kelly, is there a specific concert that you remember as your favorite? You’ve been to a lot, so it might be hard to narrow it down, but just any particularly memorable ones?
K: Right, how do I choose just one? Yeah, my favorite band, which I talk about a lot, is Blink-182, so I think any of their concerts. And I also was able to attend a Taylor Swift, the Eras tour, so I feel very special and very honored that I was able to attend those iconic shows. Yeah, those two are pretty staple shows that I think are always memorable and hold in my heart.
A: Kelly, can you talk about Hayley Williams?
K: Oh yeah! So one of my favorite frontwomen of a band, is Hayley Williams; she sings for the band Paramore. And she’s just this like powerhouse, Superwoman-type icon. She’s really cool about inclusion and female empowerment, and yeah, I just strive to be as dominant and, I don’t know if I can curse, but as much of a badass as she is. But yeah, I just try to harness her energy, and she is always super fun to watch live. So, I definitely take inspiration from her for sure too.
H: And my last question: What would you say to somebody today finding out they’d been diagnosed with CMD or who is facing a similar condition? What would be your advice having lived with this for your lives?
K: Ooh that’s always the hard one, ending with a stumper! I would just say, I think that most people have these pre-defined journeys in their mind of their life and just like future plans, and that once you get a diagnosis, you think that none of that’s going to be possible. That it may shift or go different. But I think that you’re still able to do those things, but just in a different way. You may need more assistance, more planning – a lot more planning – but I think your life can still look normal and you can still be, you know, active contributing members of society. It’ll just be staying positive and having that mindset that anything is possible and that getting this diagnosis isn’t the end, it’s just a different start to things. But yeah, I just think your life will go different and it’s not a negative thing. I think turn it into a positive. That’s hard to do in the beginning with the acceptance process, it takes time for everyone to completely accept that, but I still think you can do amazing wonderful things, just in a different way.
A: I would say, like Kelly said – I love that – the label of a diagnosis; first of all, it’s just a label. I think a lot of people take it more seriously than that. But I think also a lot of people think it’s the end, like Kelly said. But it’s honestly just the beginning. And just finally finding those answers, there’s truly nothing like it. You can’t put it into words, you have to experience it. I would also say there is no linear path. You create your own path and your own journey. There is no right way to do something. You do what’s best for you and, you know, how things happen is how things happen; it’s how it’s supposed to be. Yeah, I think just don’t lose hope, you know, find your people. And, like we said, if you don’t live with a disability, be an ally. We need that backup, that support, in this fight, and, yeah, just really encourage that. And Kelly and I love connecting with people, like please reach out and, you know, send that scary DM or email like I was saying before. We know the power of community and I feel like that’s kind of been the theme of this interview. And so please don’t hesitate, we’d love to hear from you. That’s what I would say. I feel like it’s an endless amount of advice and stuff, but yeah, just we love sharing experiences.