Colin Killick: Executive Director of ASAN Shares Organization's Mission and Accomplishments

Welcome to Disability Matters with your host Joyce Bender. All comments, views, and opinions expressed on the show are solely those of the host, guest, and callers. Now the host of Disability Matters, here's Joyce Bender.

Hi everyone, it's Joyce Bender on Disability Matters. So happy Joyce Bender. To be on with you today. I hope everyone has had a start off to a good spring. Although I must say, I'm here in Pittsburgh and one day it's 80, one day it's 40. You know, one day it's low 29, next day it's a low of 65. So I don't know where— I know you out in the Midwest or no, out west. All of that snow. Now, I love snow, but I don't like snow if it's too late in the year, which it is right now, or blizzard and takes out people's electricity, or anyone is hurt. Other than that, I'm like Miss Snow Woman. I mean, I love snow. My nickname's Frosty. So now I'll have to wait till November or December to see that snow again. But that doesn't mean I don't love spring. Like, I like to garden, I like to plant flowers. So I do like spring and I hope you're off to a great spring also. And you know what else? At Bender Consulting, I'm so excited because we have some great career opportunities. You know, I live with epilepsy. And you know, I had that accident in 1985 and I'm on this crusade to find competitive employment for Americans with disabilities. And you know, so far, I started the company 32 years ago, we have found employment, ready, for over 1,000 people. And not in these low-level, non-competitive roles, but from IT, AI, healthcare, And now even we have an opportunity for a director of data analytics. Why I'm mentioning that is that people with disabilities were not considered for years for anything in a leadership role, which is so terrible. So if you're looking for an opportunity today in healthcare, a STEM area, or an executive level, go to JoyceBenderConsult.com. Because without employment, you are never ever free in this country. You can't buy a car. You can't go on vacation. You can't get an apartment. You can't live the American dream. And that's why Valerie Jarrett said to me when, actually, at the West Wing of the White House during President Obama's administration, There should be a job for everyone. And there is, Joyce. So get out. If you know people looking for employment, and oh, by the way, there are so many jobs in the trade areas for engineers, power engineers, HVAC, plumbing. You know what I love about that? I always told high school students with disabilities, just because you don't go to college, that doesn't mean you can't get a job. Well, has that ever flipped. Now, these trade jobs are like $80,000 to $100,000. So never minimize going into one of the trade areas. So thank you first to all of my great listeners in the Americas. Thank you. Thank you. It means so much to me. When I get these emails or notes or something on LinkedIn saying how much we love the show, I keep those. That really means a lot to me. And if you are ever trying to reach me, it's joycebender@benderconsult.com. So thank you to all of you. And you know, now to those 131 countries around the world, listening to the show. Number 2, Singapore. After the United States, Singapore has the largest listening audience. And here we go. Singapore, Brazil, China, Spain, India, Canada, Japan, Taiwan, United Kingdom. That does not include from A to Z, like Albania, Algeria, Bolivia, Bosnia, the Ukraine, Iceland. I mean, I could go on and on, but I don't have time to read all these. I'm going to start, I'm going to start having a shout out to country every show. So this show, it's to Singapore. Thank you. You great listeners. Keep spreading the news. Why? It's all about quality of life for people with disabilities. Everywhere. And Yoshiko Dart, uh, special shout out to you, Yoshiko. You know how I love you. I remember every show. Um, and thank you, Highmark. What a great company Highmark is. They are, in fact, the lead sponsor of this radio show that's been going on now. The radio show has been on the air for 22 years. So today I am Very excited about the show because we have a leader in the disability community, a young leader, and we need more young leaders. And when you're done listening to this show, I want you to share it or call everyone you know and tell them to go to YouTube and see the show. Or you can listen to the show on like all social media from Spotify to Apple, Voice America, everything. You make sure you do that because our guest is Colin Killick, who is the executive director of the Autistic Self Advocacy Network, also known as ASAN, A-S-A-N. And it is just a pleasure to have him on the show today. I will say first that Chris Griffin, wanted me to point out what an awesome, wonderful young man Colin is and how honored she was to help getting you into this position, that she's watched your career and you are a force that we can try to reckon with. But Colin, welcome to the show. You know what, you see how far and wide they hear this show. People always want to know, okay, I heard the show, but I wish I knew a little bit about the person. So if you don't mind, could you tell us a little bit about your journey, like where you grew up and went on to school and why you chose to go into this field of advocacy, you know, how you moved on? We'd love to hear your story.

Fantastic. Well, thank you so much for having me on and for the kind words from you and from Kris. She's someone I've learned a lot from. Yeah, so I was, Born in Boston. My mom is a born and bred Bostonian, raised me a Red Sox fan, among many other things. I actually grew up in southern Arizona, but went to college in western Massachusetts at Williams and then moved to the Boston area after that. And what got me into this was kind of learning disability history, right? Like, I'm autistic and autism manifests very differently in different people. For me, it has caused issues with both executive functioning, but also like motor planning, fine motor skills. So my, you know, I had muscular issues and going to school in the '90s before computers in classrooms were super common, I always needed accommodations. I needed a 504 plan. And that when I got my 504 plan in 7th grade, it totally transformed my life. I didn't have to struggle to get access to accommodations in the classroom anymore. And I went from like a C student to an A student overnight. And so when I learned that those 504 plans existed because of the 504 sit-ins, because of folks like Judy Heumann, I was like, oh, well, this is what I want to do with my life. So I got into a training program for young Jewish community organizers, and I found a placement at this organization in Boston, Disability Policy Consortium. And I got mentored by a bunch of these longtime disability activists in Massachusetts, mostly wheelchair users, this trifecta of John Winski, Charlie Carr, Dennis Heaphy, some folks out there will be familiar with, all amazing advocates. I kind of grew up under their tutelage. I learned how to do legislative advocacy, to go to the State House. Eventually, when I got my master's in public policy, knowing that I wanted to keep serving this community, and then when I finished up the program, John, who'd been executive director, called me and said, I'm retiring and you're taking over for me. And I basically went— at the time I was 28 and had no management skills, and I didn't think I was right for the job, but he did. And I took the plunge and, yeah, ran that organization for 5 years before coming here to D.C. to have the great privilege of leading ASAN, which is an organization I had admired for a very long time.

You know, I wondered why you didn't have that Boston accent. Now I know the Arizona part and all the— because as you know, Chris Griffith, you definitely know she's from Boston.

Oh yeah.

You know what I mean? You definitely know. And by the way, I know everyone listening will agree with me. Doesn't he have a great radio voice? I mean, he looks good on YouTube and If you're listening on Spotify, he's one of, he is a good radio voice. I love, I notice these things. I notice.

I had a show on college radio when I was in college. So I have a little bit of practice.

You can tell. I mean, you have a very good radio voice. So what is the autistic advocacy Network? Like, what is its, uh, what is its mission? Is it national? Where is it? Let's hear all about it.

Yeah, so, um, Autistic Self Advocacy Network, we're actually 20 years old this year. Um, we're based in DC. Um, we're a grassroots organization. We do work across the country. We have a local affiliate network in most states who we support and provide, you know, training, support, We try and build self-advocacy skills in autistic people across the country. All of our employees are autistic, myself included. All our board members are autistic. And we exist really because, you know, there's that great slogan of the disability rights movement, "Nothing about us without us," right? And even compared to some other parts of the disability community, autistic people historically were spoken over, were spoken for, but not really spoken to, right? There were a lot of organizations out there, autism-focused organizations that had no leadership whatsoever from autistic people that were promoting policies that we did not feel— I should say we, the founders of ASAN, felt did not represent the interests of autistic people. And so this organization really exists to be the voice for autistic people, for the whole autism community, in public policy, in culture. We advocate on Capitol Hill and we do a lot to develop especially accessible material, material in plain language so that autistic people with intellectual disabilities in particular can understand what's going on, the issues that affect them, and can advocate in their communities and to their legislators.

Wow. Well, you're all across the United States. Do you have chapters or how does it work?

We have affiliates. So organizations, they're not— it's not called, you know, ASAN Colorado or whatever. The organizations all have their own names and identities, but they can partner with us. They can join our affiliate network and we, we provide support and training. We have a mini grant program that affiliates can apply for to get small grants to do grassroots projects. We bring people to DC sometimes to meet with the legislators, or we set up meetings, we help people set up meetings with their legislators. We provide support and advice if they want to do campaigns in their own states, and we keep the community informed on issues that affect them.

That's good. I'm asking you because I was just wondering if some young persons listening to the show who's autistic saying, ah, I need help where I live. Let's say I'm in Mississippi. I need help where I live, you know, with discrimination or just exclusion in general. How could they— what would they do? How could they—

yeah, absolutely. So there are a couple things. I mean, firstly, in general, right, they can follow us on social media. They can look at our website. It's autisticadvocacy.org, or we're Autistic Self Advocacy Network on virtually all the platforms. We don't use Twitter anymore, but everywhere else. So they can get general information about what's going on at the national level. But if they wanted to help get connected to folks in their local area, they can email us. Our general email inbox is info@autisticadvocacy.org. We've got staff who are focused on state and local issues. We'd review it, we'd get back to them. If we have connections in their area, we could put them in touch with those. If we don't, we might go through our networks and say, hey, do you know somebody in Mississippi, let's say, who could partner with this person?

Yeah. Oh, that would be good. Well, there you go. Just go to the website then, right? What is that one more time?

AutisticAdvocacy.org.

If someone wants to make a donation, is that at the website?

It is. Yes, it is. And they can go through that. We also have other channels like PayPal, but the website's the easiest way to do it. And we actually this year, because it's our 20th anniversary and because we just switched to a new fundraising platform that lets us do this, we're going to be launching a program this year to let people stage their own fundraisers for ASAN and make it very easy to set up their own fundraiser, maybe have a local poetry night or sports evening or whatever they want to do and take donations for us. We're excited about that. So we're a very grassroots organization. We try and be very accountable to the people that we serve, and we're honored to get a lot of our support from small donors, mostly autistic people themselves.

That's great. That's great. Okay, well, I think we're going to go to a quick break. And if you just joined us right now, we're talking to Colin— is it—

it's Killick.

I hope I said that right the first time. Colin Killick. From the Autistic Self Advocacy Network, and Colin is the executive director of the organization. This is Joyce Bender, America's Voice, where disability matters, at voiceamerica.com. Don't go away, we'll be right back with Colin. ¡Hola!

At Highmark Health, we believe what makes us unique makes us better. Our differences broaden our perspectives and foster a variety of skills to complement each other, creating a stronger and more vibrant workforce. It's this belief that earned us recognition as the Best Place to Work for the 10th year for individuals with disabilities in a survey by the American Association of People with Disabilities Out and disability in. We'll continue to celebrate and benefit from the inclusion of all people. To find out more, visit highmarkhealth.org.

Are you currently receiving SSDI or SSI and wanting to work? Did you know there is a free Social Security program called Ticket to Work to help you try work without risking your benefits? My Employment Options is an authorized SSA Employment Network specializing in work-at-home and local job placement in 47 states. In 47 states. Our clients receive a personal counselor to help find the best job fit and a staff-certified benefits counselor for help with Ticket to Work protections. Ready to try working? Apply for free job placement help at myemploymentoptions.com. Everyone has unique abilities, and with ABLE NOW, individuals with disabilities are able to save money while maintaining certain benefits such as Medicaid. ABLE NOW is a tax-advantaged savings program specifically designed for people with disabilities. Open an account online today and start saving for the things that are important to you. To learn if you or someone you know is eligible, visit ablenow.com. ABLE NOW is administered by Virginia529. Since 1985, Bender Consulting Services has served as a national leader in advancing employment of people with disabilities including veterans with disabilities, with private sector companies and federal government agencies. Bender assists customers with achieving their diversity and workforce inclusion initiatives by tapping into a talent pool of individuals seeking professional positions, including those in the STEM fields. In addition, Bender services include disability employment consulting, training in technology accessibility through their HI-TESS line of service. For more For more information, please visit www.benderconsult.com. Streaming live, the leader in internet talk radio, voiceamerica.com.

You're listening to Disability Matters. Now please welcome back the host of Disability Matters. Here's Joyce Bender.

Hi everyone, we're back. We're back with Collin Kellogg from the Autistic Self Advocacy Network, also known as ASAN. I don't know, do a lot of people— is that what they go by, Collin?

Um, some people say ASAN, some people say A-S-A-N, some people use the full name. We're fine with all of them.

All of the above, huh? Um, well, I wanted to ask you, how is your organization different from other autism organizations?

Yeah. I'd say certainly compared to the big national ones, the fact that we are led by autistic people. We were the first of the major national organizations to be led by autistic people as compared to say Autism Speaks, which is not led by autistic people, has generally not had many, if any, autistic people involved in its leadership. Has advocated for policies that we haven't felt have been in the best interests of autistic people. There are now other organizations at the national level led by autistic people like Autistic People of Color Fund, Autistic Women and Nonbinary Network, who we work closely with. But we're, I think, the largest of the autistic-led organizations.

Well, yeah, if someone would ask me, I would say You're more advocates for autism down on the ground and leadership of people. Nothing about us without us. How can you run an organization and say, oh, you can do anything, but by the way, we're not going to have a CEO with autism?

Exactly right. We demonstrate that autistic people are in fact fully capable of doing this. Our voices ought to count and count quite heavily for what is best for our community. The other thing I should say is that we very much see ourselves as a disability rights organization run by autistic people. So we work very closely with American Association of People with Disabilities, National Council for Independent Living, all of the other national disability rights groups, and we stand shoulder to shoulder with them fighting for Medicaid access for the whole community, right? Fighting to defend IDEA and special education programs, fighting to end subminimum wage and promote supportive integrated employment. We are an autism-focused organization, we're an organization run by autistic people, but we are very much part of the broader disability rights struggle.

Mm-hmm. Right. Yeah. I wanted to ask you, I've noticed when we've interviewed people here at Bender, some people want to be called people who live with autism and other people say, no, I'm an autistic person. Is there some consensus on this or a view about this?

Yeah, I mean, different people have different preferences, but I would certainly say the plurality of autistic people, certainly people who are active autistic self-advocates who are out there, you know, participating in the community, getting involved in activism, they tend to say autistic people. And we, you know, I certainly describe myself as an autistic person. And I think that that is really like, this is a fundamental part of our identity. I think, and it's also that like, I think to emphasize, right, is that autism is a sort of different way of, a different way for the brain to function more than it is like, it's not a disease, right? Like it's a, you know, it's a disability, But that, like, autism is core to who we are, right? Autism is in the brain, right? And it's something you're born with, right? So you can't, you know, I, my autism is core to who I am. If I ceased to be autistic, I would be a completely different person. And so that phrasing of I'm an autistic person in the same way that I say that I'm, you know, a Jewish person or a bisexual person or, you know, what have you, like, it's core to who I am.

Yeah. Well, and that makes sense. Here's what I tell companies. I say, well, if you say autistic person and the person that you're interviewing says, why don't call me that, person first. Fine. But if they say, no, I am an autistic person, although I think I don't know about people at companies and, you know, in the public at large. It seems that people who are advocates or younger people seem to be more tuned into this. But I do say autistic people. So I just wanted, I wanted to hear your opinion about that. It's very interesting, isn't it, how words matter?

They do. And obviously, yeah, first and foremost, respect how people want to self-identify. And they, you know, and there are differences, right? People— it tends to be people with intellectual disabilities specifically. Folks in that community really do prefer person-first language. And we are careful to use that when we're speaking about that specifically.

Oh, how about when people say to me, Oh, my, my child is very high level functioning. You know what I mean? He doesn't have autism. No, he's, he has the Asperger syndrome. And who is Mr. Asperger? A Nazi. He was a Nazi. He was in Hitler's Nazi time. And you know, I know people don't realize it, but when they say Maybe it's how they say it. Like if they're wanting me to understand, hey, the person can do this STEM job or whatever the job is. You know, they could just say really bright. You know, this person is real. My child is really bright, really intelligent. But sometimes when people do that, my child is high-level functioning. They don't realize, but it's insulting. Because it's really saying everything else is bad or shameful.

Exactly.

And it's also not— that's my opinion.

Oh, we agree. And we, we pointed— we don't use functioning labels. We don't think that they're, um, helpful or indeed accurate. Um, there's, there's a great phrase, um, I learned it from the, um, autistic researcher Stephen Kapp. I'm not sure if he coined it or if somebody else did, uh, but the autistic people have spiky profiles, right? We tend to have often intense, intense strengths and intense weaknesses, right? And they vary hugely from person to person. And so autism is not a sort of lit line from low functioning to high functioning, right? Often autistic people will have intense aptitudes in certain areas and have intense needs for support in other areas. And so you can't easily put someone into one box or the other. That's also why we firmly reject labels like profound autism or severe autism and why we've worked, you know, to have a single diagnosis. Not because every autistic person is the same, quite the contrary. It's because it's a broad spectrum. It's because every autistic person is different and we believe you ought to meet each autistic person where they are and get them the specific supports that they need instead of trying to put people into a couple of crude boxes.

Yeah, I know. I see that all the time. But right now, oh, we're ready for one of my highlights, and that is Mathis on the Mic, our news segment. And boy, I'm telling you, Jennifer, that you're able to stand outside is a miracle.

Hi, I'm actually coming to you from Utah.

Oh, that's why you're able to. Well, we're— we know the news is still the news. Yes. I will tell you, just today, Jennifer, just today, someone said to me, wow, it's different every day. So what news do you have for us today? It's always something. I mean, I don't know how you choose.

No, actually what I Oh well, there's a lot to choose from these days, unfortunately. But, um, what I wanted to talk to you about today is something that I previewed before. It's called the Save America Act, and this is something that would, um, it would impose pretty restrictive requirements on voting. In fact, Colin knows about this because ASAN has actually been quite active on this, but this is Legislation that passed the House and it is now in the Senate. And what this bill would do is it would require show proof of citizenship in order to register to vote, and it would require them to show a photo ID when they do vote. And this is something that is far more restrictive, this proof of citizenship requirement, than anything that we have had before for voting. And this would impact in particular many groups, including people with disabilities who are less likely to have some of the documentation that you would need to prove your citizenship, either a passport, a real ID. And so that the impact of this kind of legislation is to disenfranchise, to take away the right to vote from many people who should have the right to vote. And so if you are concerned about this, what you should do is contact your senators and tell them that the Save America Vote is not something that they should support, that we're concerned that it will harm people with disabilities, that it will harm others, that it will take away the right to vote from people who absolutely should be voting simply because they don't have the right documentation. That kind of documentation, proof of citizenship, is not something that we have required for decades in this country. That's not how our voting systems work, and it does not need to be how our voting systems work. So tell the Senate not to pass this bill.

Jennifer, just so I have one part correct, so they would— the person would have to have proof of— they would have to have a passport, uh, a, a driver's license ID. Would they have to have that ID?

I think if you have a real ID, then that may be enough, or a passport. There's several different forms of proof of citizenship that you can produce, and a birth certificate, as I understand it, is not always enough. But, um, in any event, it would take away the right to vote for many, many people because they're not going to have that documentation on hand. And even if they could get that documentation, which costs money and takes time. Often if people are trying to get that documentation in place, it's gonna be too late by the time that the election happens.

So that's why this is so important. This reminds me of that whole thing with all the forms and meetings you have to have with Medicaid people. If that occurs, this reminds me of that because first of all, Many people, they're not going to have that, and they're not going to understand they have to have that, you know, and they're going to be turned away when they go to VIRT. But my, um, because if it's not up to date, oh my goodness, to get like an ID for your driver's license, uh, you know, to get the hours Yes, and lots of people with disabilities don't drive.

Often people, for example, with vision impairments, um, right? Yes, epilepsy as well. And so, um, you know, the bill number I should say is S.3752, um, and it's called the Save America Act.

So now I, I do have one other, one last question, uh Are you advising that we start telling people to go get this just in case that passes, or not?

I, I think at this point, um, we have a pretty good chance of defeating this bill because they would need 60 votes in the Senate. But it is important that people contact their senators and let them know, because if senators don't hear anything, then this bill can't pass.

Okay, well, you've listened to Jennifer before, um, Colin. We have had an impact in different, uh, legislation because of Jennifer, and we're the only place that has this news every show on the half hour. So don't think about it though. And don't think just about you. Don't think, oh, I have it. Yeah, but how about the blind person, the person with epilepsy, the elderly person, the person that is in poverty and can't go do all of this or doesn't have the wherewithal? What about them? You know, what's going to happen to all those people? So You've got to contact your senator and say to oppose the Vote Save America— Save America Vote Act. Is that the correct name?

Save America Act.

Yeah, Save America Act. Yes, Colin, you wanted to add something?

Well, in fact, yeah, Jennifer mentioned we've been working, our staff has been working to oppose this bill on the Hill. And I think the impacts on people with disabilities had really been undercovered in this because the people with disabilities are much less likely to have these IDs. And in fact, on the Real ID front, actually, PolitiFact looked into this. Only 6 states issue even real IDs that actually comply with the requirements of this bill, because those— only in those states does even a real ID have a citizenship marker on it. In the other 44 states, even a Real ID compliant driver's license would not let you vote under the provisions of this bill.

Terrible.

You'd have to have a passport or your original birth certificate.

You know what else you can all do for me? Share this show. Get this out on your social media. Share and reshare, because they're gonna hear this brilliant young man, uh, Colin, talking about being an autistic person and leadership in this country. But Jennifer, they're going to hear Jennifer talk about this You've got to share this show. You've got to get in touch with that senator. Don't sit back. Don't say, oh, that isn't good. Do something. Let's show everyone the power of the disability community and what we have to say. Okay, well, Jennifer, thank you. And we look forward to talking to you next week, where you have to pick 1 out of 100 things to talk about.

I promise I'll have something.

All right, have a great time. All right, you too.

Bye.

You know, that's scary, Colin.

It is.

That is really scary.

Well, and in fact, almost every effort to crack down on voting is going to hit people with disabilities disproportionately, right? Because people in our community, they're less likely to have certain kinds of ID, They're less likely to be able to get to a voter registration office or a polling place, right? There are efforts to crack down on voting by mail, which of course is vital for accessibility purposes for a lot of folks in our community. So voting is a disability rights issue. You know, we need voting to be straightforward for people with disabilities to be able to access their democratic rights.

Yeah. Oh, I'll tell you, Collin, That's just absolutely terrible, but we're going to do something about it. Colin, tell us about some of the programs you have at ASAN. What are some of your programs?

Yeah, it's a wide variety of them. One I wanted to actually particularly highlight, if you've got any autistic college students in your listening audience or family members of autistic college students, we run a program called ACI, the Autism Campus Initiative. Which every year provides an organizing and self-advocacy workshop for autistic college students, teaches them how to start a disability student group on their campus, how to talk to their legislators at both the local and state levels. It teaches them how to run an advocacy campaign. We've been doing this for a number of years. We're very excited about it. The deadline has passed for this year, but we do the program every year. And so we'd love for people to apply if they if they know that. We do regular webinars on all kinds of topics, including around sort of policy issues, things about Medicaid, but also other topics. We have one coming up actually at the end of this month on the 30th in partnership with the Partnership— working with the Partnership for Inclusive Disaster Strategies on heat emergencies and how those impact people with disabilities, especially people with intellectual developmental disabilities. How people can stay safe from heat and how policymakers can make policies that keep people safe from heat. We have a policy brief that we've co-written coming out on people with disabilities and prison reentry, right? How those issues intersect. So yeah, we're working on a huge variety of issues. And of course, we are fighting on a variety of legislative fronts. In addition to trying to stop Save America Act, we're fighting to protect Medicaid funding from, you know, the— there's the real possibility, unfortunately, urgently of more cuts via another reconciliation bill. We're trying to push back against that. We're gonna need people to talk to their legislators. And yeah, anything that we think impacts the autistic community, in fact, disability community, we're gonna do our best to be involved in. And if people follow our social media, we put out a lot of action alerts, ways people can get involved, ways that they can make a difference for themselves and for the broader community.

Oh, that, you know, that is, uh, great. I want to ask you about that college program. When should people look to apply for that? When will that be out there?

You said it's over now for this year. Yeah, but if they look sort of beginning of next year, like, look, come, you know, back in, in early 2027, um, uh, the— I could get an exact date, um But yeah, we— this comes around every year. So we are always looking for people to participate. This also is not limited to the US. So applications for the 2027 program will open in January 2027. We have participants from Mexico, from Canada. I think we have a few more countries participating now. And it's a virtual program, so folks don't have to be able to travel to the US in order to participate.

Oh, that is great for any of you listening to the show. You know, you've got to look, you know what I want you to do, Colin, is I want you to jump on one of the shows in December or November to remind everyone about that. You know, since we have listeners from everywhere, I mean, that is really great. And that it's virtual is fantastic. Yep. Everyone should be going to this website frequently because you can see how many, how much information that, you know, the Autistic Self Advocacy Network is offering to everyone. I mean, this is great. Wonderful. Okay. I have to ask you about something I've read about more than one time. The Judge Rotenberg Center. When I read it, I have to be honest with you, it was hard for me to believe. Hard for me to believe. But what is going on with that center? And could you just briefly tell our listeners what was happening there?

Yeah, so the Judge Rotenberg Center, it's in Canton, Massachusetts. So I was involved in fighting against, trying to stop some of the practices there since long before I came to ASAN. This is an entity, it's a school, and I put that in some degree of quotes, for autistic people who are seen as having behavioral issues. And it's been the subject of immense controversy. Many people who've gone there have alleged that the practices there are abusive, including the fact that it's the only location in the United States which uses painful electric shock devices as a form of so-called behavior modification on autistic people. There was an attempt, the Food and Drug Administration tried to make a rule, and I believe it was 2020, to ban the devices. That was unfortunately overturned in 2021. There has been a revised rule, and we are hopeful even given everything that's going on, that revised rule is still on the agenda to go out at some point this year. So fingers crossed that'll happen. There's also a bill in Massachusetts to ban the use of devices at the state level. If you have any listeners in Massachusetts, I can call that up. The bill number is Uh, sorry, I can get the bill number in a moment.

Um, while you're looking for that bill number, I just want to say, even if it does not get passed on a federal level, I think you would have a good chance on the state level. I don't know, what do you think?

Yeah, it's been tough historically. Um, the Center has had some defenders in the Massachusetts state legislature. Um, But we'll have to see. I'm hopeful. But yeah, it's— it is H.245 in the Massachusetts state legislature. And I wanted to just take a moment to quote from someone, former resident named Jennifer Musumba, who said this was in her testimony about that bill, said that they use the device against the nonverbal students. They threaten them with it to make them do things. She said, you're not allowed to say the word no or not follow directions because you'll get shocked. And that, I think, says it all, that someone who has been through this.

Absolutely barbaric. I can't even believe they're allowed to do it. And I can't imagine what would be the reason legislators would defend this. I don't know. I mean, I don't know unless someone has deep pockets. I don't know. Because that, if you would go say to people, hey, do you think that, you know, for people with disabilities, autistic, nonverbal, or whatever the situation, if they don't listen, that you could used what I would refer to— I know it isn't a cattle prod, but you know what I mean— a shock, some type of shocks. What are these devices? Are they like tasers, or is it something around the person's neck, or hopefully not? What is it?

They're, they're fitted to their bodies, um, uh, and it delivers— designed to deliver a painful electric shock to the skin. I'm not exactly sure how what part of the body they're attached to.

That is terrible. That is absolutely terrible. Well, everyone, you heard him. Call your legislator. Uh, I mean, oh, in Massachusetts especially, but everywhere it's important. But come on, um, I mean, why would you want to let that even go on in your state? I mean, it's terrible. Um, well, Colin, I can see you're working on so many things. Which congratulations to you for everything you're doing for all of us. But what do you hope? What do you hope to accomplish in 2026?

Yeah, I hope that we can begin to change the narrative that some people have about autism. I think there is so much fear, and that fear has been fed into by some powerful people. We have Secretary of Health and Human Services last April during Autism Acceptance Month saying, quote unquote, that autism destroys children and destroys family and listing off these things, claiming that autistic people can't play baseball, can't write poetry, will never work or fall in love or have children. We know all of those things aren't true. They're not only not true of autistic people in general, They're not true of autistic people with intellectual disabilities. They're not true of autistic people who are non-speaking. I know non-speaking poets, right? I know autistic people with intellectual disabilities who not only have kids but are great parents, right? Life as an autistic person can be hard. Absolutely. Especially in ableist society and especially in a society where services and supports are underfunded and too frequently unavailable. But life as an autistic person is worth living. Life as an autistic person has joy and fulfillment and purpose, especially when people actually get their needs met. And I'm hopeful that we can start to change the narrative in a host of ways, not just through the political process, although that's obviously where we focus, but in culture as well. We actually worked with Mattel over 18 months to develop an autistic Barbie that came out early this year. Part of why we did that, and we consulted, it has articulated hands that can flap in the way autistic people do for stimming, and it has a communication device, an augmented alternative communication device that people who are non-speaking use to communicate, and it has a fidget spinner, and it has noise-canceling headphones like these, all these things that autistic people use to make the world more accessible. We hope that an autistic child can look at that and see a portrayal of themselves that's positive. For that matter, that a non-autistic child can look at that and they can think about autistic people in a positive way, a non-stigmatizing way. Through all these gestures, through autistic people being their full selves in public, that we can begin to let society think about autism in a different way.

Well, we have at our church an autistic ministry. And with, you know, all these children participating. And, you know, I know, of course, we all want the world to be bipartisan, but I'm going to say that statement about people with autism should be destroyed, or, or I mean that it destroys people and it destroys children. I mean, that's terrible. 'No wonder I have a hard time getting jobs for people.' I mean, really, when you say that, you know, anyone in authority, when they say that, it has an impact.

When you say somebody has been destroyed, it means you're giving up on them, right? It means you're writing them off. You're treating them like rubble, right? To be cleared away. And it was— that's what was so offensive about that is no one deserves to be written off. Right? No one— every disabled person, every autistic person's life is worth living. And if we can't all agree on that, then what the hell are we doing?

We are in Nazi Germany in 1939. That's what it would be doing. Yeah. So, hey, I am with you. As I said, people with disabilities, we have a lot of power. We need to speak up. We need to get out there and show them what we're made of. And that we are talented people and that we're not going to sit back. We're not going to settle. We're moving forward. Right, Colin? Amen. Yes. Well, Colin, you are such a, just a wonderful, dynamic, bright young man who I'm so excited that you're the executive director of the Autistic Advocacy Network, Autistic Self Advocacy— sorry, Autistic Self Advocacy Network. Who is your role model? Because look at you now in this leadership role. Who is your role model?

So Judy Heumann certainly was one of them, and I got to meet her, and that was a big thrill. But since I think your listeners probably know her story already, if I could just quickly describe My biggest mentor was, I mentioned him before, John Winski, who was this legendary figure in Massachusetts disability rights advocacy specifically. Since the '70s, he had fought for the ADA. He got a groundbreaking personal care attendant program and Medicaid program for people with complex disabilities set up in Massachusetts. He sued to get wheelchair ramps put in on Beacon Hill, the neighborhood where the State House is. And won. And he just, he was this kind of, you know, cowboy-type leader. You know, he did things by the seat of his pants, but they always worked out. And people, you know, everyone who ever worked with him would run through fire for that man. And, you know, he taught me everything I know about leadership and about disability rights. And he saw things in me I didn't see in myself, and he helped me see them. And He gave me the opportunity to lead, and he unfortunately passed away in 2020. I think about him all the time. I wish I could still get in touch, but I try to live my life and my career in a way that he'd be proud of.

What was his full name again?

John Winske, W-I-N-S-K-E, and my former organization, Disability Policy Consortium, and it's their 30th anniversary, by the way, this year. They have a John Winski Memorial Awards every year to keep his legacy alive.

Oh, that is great. Well, that is a great role model. I mean, because he did it and his legacy lives on and you're one of the ways it lives on, Colin. That is a really great thing. Well, Colin, what message do you have for our listeners today?

Um, you said it, but you have power. Your voice matters. Your elected officials need to hear from you. And even in these difficult moments, we can make a difference. We can fight back. We can make change. And as Dr. King said, the moral arc of the universe is long, but it bends towards justice. But we have to be the ones to bend it, right? If we speak up, if we use our voices, if we get together and we, you know, we show up in people's offices and we flood their phone lines and their email inboxes, we can make the change that our community needs to see.

Yes, we've got to bend that arc. Yes, President Obama had that in the Oval Office, that quote. And what a great quote it is. But it takes a group of people like us, like you, You've got to get fired up. Don't sit back and don't let people try to push you down. You have to rise up to the occasion and then go further. No stopping us. Well, we end every show with a quote. This is actually one of my favorite quotes. I say this frequently, and it is from a well-known national autistic advocate Temple Grandin, and the quote is, "I am different, not less." I am different, not less. And that says it all. Remember, in the words of Mary Brocker, when you get up tomorrow, choose joy. Your day will go so much better. This is Joyce Bender, America's Voice. Where disability matters at voiceamerica.com. Talk to you all next week.

Voice America would like to thank you for tuning in. Please join us next Tuesday at 11 AM Pacific Time and 2 PM Eastern Time for another installment of Disability Matters right here on the Voice America Variety Channel. We are the leader in live internet Talk Radio. VoiceAmerica.com.