Boundless Abilities: Autism and More
Well-Being explores physical, mental, and emotional health, with a special focus on people with intellectual and developmental disabilities or behavioral health challenges such as autism. Each episode features a roundtable of clinicians, community members, educators, and other experts in the field discussing timely topics and sharing strategies to help cope with stress. At Boundless, our mission is to build a world that realizes the boundless potential of all people.
Boundless Abilities: Autism and More
When the System Fails People with Disabilities, Nick Comstock Speaks Up
What happens when society builds systems that leave people with disabilities isolated, unemployed, and without essential services? Nick Comstock has lived that reality—and he's speaking up about it.
Nick joins us to share his journey living with cytomegalovirus (CMV), a condition that's left him wheelchair-dependent with spasticity and dystonia. With remarkable candor and humor, he opens up about spending "a lot of time in my bedroom alone with a TV, phone and computer" after high school when services disappeared. This "services cliff" affects countless young adults with disabilities who suddenly lose their support systems and social connections.
Only 22% of people with disabilities were employed in 2023, despite this being the highest rate since data collection began in 2008. Nick himself has been declared "unemployable" by authorities in multiple counties solely because of his disability. Yet he's defied these limitations by creating "Nick Speaks," a successful podcast dedicated to disability issues that's approaching 30 episodes.
Transportation emerges as a critical barrier throughout our conversation. As Nick explains, needing to schedule rides 30 days in advance versus 30 minutes makes spontaneous outings, job opportunities, and dating nearly impossible. He challenges listeners to reconsider how we structure inclusion, noting that special programs sometimes unintentionally create bubbles rather than bridges.
Nick leaves us with a powerful message for organizations and employers: people with disabilities "love passionately" and "want to work harder and contribute to their community." His story reminds us that beyond policies and programs are human beings seeking the same connections and purpose we all desire.
Welcome to Boundless Abilities, a podcast brought to you by Boundless. Welcome everyone. We are the largest nonprofit in Ohio that provides services to individuals with intellectual and developmental disabilities and behavioral health challenges through residential support, autism services, primary health care, day programs, counseling and a whole lot more to children and adults. Our mission is to build a world that realizes the boundless potential of all people. I'm your host, scott Light, and hey, we have a fellow podcaster on the show today and I think that's a first. Nick Comstock of Nick Speaks of that Podcast.
Speaker 2:Nick welcome to you. Thank you, scott. Thank you so much for having me. This is such a thrill for me to actually be in a podcast studio and not through like Zoom or something, because that's how I do my podcast, so this is such a thrill to be here.
Speaker 1:Well, we're so glad you're here and we've got a lot to talk about, including your podcast, and of course, we'll tell people where they can find that, and we're going to talk about that in just a little bit. Absolutely, nick. Let's begin this way you have a condition and the acronym is CMV. Would you tell our listeners what it is and how it affects you?
Speaker 2:So CMV is called cytomegalovirus that's a mouthful I understand. It was first discovered up in Minnesota in 1990. Back then they did not have any medications for it and my mom contracted the virus when she was pregnant with me and my twin brother. Before you go crazy and say, omg, you're a twin, it's not all that's cracked up to me and I'm the older one, the better looking one, the smarter one, so all the above, yes.
Speaker 2:So, and you might ask how? How much are you older? By a minute, and it's still. I'm still older, even though it's 60 seconds.
Speaker 1:So yeah, and you rub it in on him right All the time, All the time. How does CMV affect you?
Speaker 2:Um. So I'm in a wheelchair 24 seven. I'm very spastic, um, which, especially the cold weather that we've been in this winter, has not helped at all. Winter is not my friend and really, if you're out there with a disability and you struggle with spasms period, you know what I'm talking about. I also have another, uh, neurological disease called dystonia, which is where you can see here in studio, scott, but my hand, my left hand, my left wrist, is curled and I also have some of that in my neck which contributes to involuntary head movements and stuff like that.
Speaker 1:Are there medicines that help?
Speaker 2:Not for my spasms per se. My body is really weird when it comes to medication. My body rejects pain medication, so it doesn't really help and there's not really. The virus that's in me is actually dormant, so it's not affecting anything right now. I'm just dealing with the after effects of it, got it, got it.
Speaker 1:Let's do this, nick. Let's talk in three broad buckets, if we can. Let's talk healthcare, let's talk employment, and we're also going to talk relationships. We're going to talk dating as well. Let's come back to the first one I mentioned. Let's talk healthcare. When you were growing up, there wasn't an emphasis on coordinated care and multi-agency care under one roof. We know that there is certainly an increased effort on that now, but how did that affect you and the medical care you received when you were growing up? Because everything was disparate at that point, very spread out.
Speaker 2:Yeah, so my mom and my family were my primary caregivers for the first almost 30 years of my life, so I didn't start receiving home health care until the year of 2012. And so it's been about a decade now, maybe 12 years or so, so I've had the good, the bad and the really, really ugly as far as home health care concerns.
Speaker 1:Nick, we also talked when we had a pre-recording phone call, zoom call. Actually, we talked about the services cliff and you know this well. For young people, especially once they turn 18, 19, 20 years old and maybe leave high school or maybe a school after high school, there is a cliff and the services just drop off. Is that improving at all?
Speaker 2:So I've spent a lot of time in my bedroom alone with a TV, phone and computer and I tell special needs parents all the time you have to have a plan for your special needs child after they graduate school, Because a lot of times that is their social, that is their time that they spend with friends, and once that's over and their friends who aren't disabled go to college or something, they have nothing. And then parents just throw up their hands a lot of times and they're like I don't know what to do. So what I tell parents is you have to plan your special needs child's next chapter just as you would your non-special needs child. It may look very different, but you still have to plan it because otherwise your kid's going to struggle with a lot of depression, a lot of resentment as a why aren't they getting to do a lot of the same things that their brothers and sisters do?
Speaker 1:How challenging is coordinated care for you these days.
Speaker 2:Well, thankfully I have a really good provider that I started with in August of last year named Rekindle Living. They're a relatively new agency and they started in the pandemic and I give any business a prop that started in the middle of the pandemic, so they're just really wonderful. I have automatic transportation to anywhere I need to go. They were able to help me get here today, so they're just fantastic.
Speaker 1:And Boundless is helping as well, right.
Speaker 2:With the counseling services.
Speaker 1:yes, and that's helpful so far.
Speaker 2:Yeah, Right now we've done, I think as of this recording, about 14 sessions and I'm getting to know my counselor, Garrett, who is wonderful and really takes time to listen to me and try to figure things out. So that's going well. And if you're not in therapy in today's world and you think you would be looked at as crazy if you went into therapy, trust me you wouldn't. And if you really sat down long enough to try to think, if you really do need therapy, you probably do.
Speaker 1:Well, and the brain is the most complicated organ we have in the body and it's not even close.
Speaker 1:And therapy is a sign of strength? Yes, it is, it absolutely is. Let's talk about employment, and I've got a statistic here. I knew you were coming on. I knew a fellow podcaster, so I had to raise my game here, nick. Yeah, according to the Bureau of Labor Statistics, in 2023, a little over 22% of people with a disability were employed, and that is actually the highest number since data was first collected in 2008. But still, unemployment rates are much higher for people with a disability, and that's across all educational groups. Can you talk about your challenges with employment?
Speaker 2:Absolutely, and when I read that statistic before coming on this podcast, my jaw just dropped, because a lot of people think that you know, you have the ADA, you have all these things put into place for people with disabilities, and the ADA is 35 years old now and you would think that something like the ADA, with having that in place, that the employment rate for people with disabilities would be much higher. Unfortunately, it's not, and so my experience has been that I've had two states and three different counties tell me that I'm unemployable simply just because of my disability. So yeah, I've just had a lot of issue with that.
Speaker 1:Nick, let me ask you about this Again. According to the federal government, people with a disability were more likely to find part-time work than full-time. Has that been any easier for you?
Speaker 2:Finding part-time work? No, volunteer work Maybe, but that's something I've really, really had to dig for and I haven't had much volunteer work here in the state of Ohio, the only thing that I have had in another county. I was a part of their human rights committee for four years and they paid me like a $25 stipend to come do their human rights committee every month, but that's about as close as I've gotten to being employed.
Speaker 1:Okay, let's talk about your podcast.
Speaker 2:What's it about? Employed? Okay, let's talk about your podcast. What's it about? So my podcast is called Nick Speaks, the podcast dedicated to the disabled community, where we speak up, speak out and speak loud about the issues that matter to the disabled the most.
Speaker 2:I came up with this idea last August. I was actually um doing a career discovery or career exploration through OOD, which stands for Ohioans without for opportunities with disabilities. I may have just butchered that, but we have too many D's and OOs and all that stuff, so um, but yeah, so I found them, o's and all that stuff, so um, but yeah, so I found them. I found my podcast coach, actually, kyle goodnight, through um career exploration.
Speaker 2:And if you don't know what clear career exploration is, it's where you're assigned a case manager. They sit down with you and they figure out what you would like to do and then they try to go find people that are in that field that you can talk to, and so when we did that I believe it was about a 90 day stand when we did that everybody that I talked to. Cause I want to be an actor, I want to be a public speaker, I've done some speeches at the Ohio state house, um, so I want to expand all that, and so, when we did all the career exploration, everybody said Nick, you have to do a podcast, this is what you have. This is the new thing. Now, this is where a lot of people are getting their information. So that's where we came up with. Kyle and I started working together back in August probably a little bit before that and we are 26 episodes and, as of this recording, we'll probably be about near almost near 30. But yeah, it's been a lot of fun.
Speaker 1:That's awesome, and most podcast series don't make it past episode four, so the fact that you're pushing 30, nick, that is huge, man yeah.
Speaker 2:Yeah, and I plan to go as long as I can go. I. You can find it on Apple Podcasts, spotify. You can also watch it on my YouTube channel at Nicholas Comstock, which the spelling for Nicholas is a little different. I don't spell it with an H. It's spelled N-I-C-O-L-A-S, comstock, c-o-m-s-t-o-c-k. Or you can just type in Nick Speaks, n-i-c-k Speaks, and it'll come up on your Apple, spotify or my YouTube channel.
Speaker 1:It's a good podcast too. I enjoyed listening to a couple of episodes before you came to our podcast. Let me bring up that third topic that I mentioned earlier relationships and dating. Oh Lord, got to keep it G-rated, nick. Now, we've covered these topics on other episodes here, and it's always eminently fascinating, not only for us, but for our listeners too. All right, nick, so broad question How's your dating life?
Speaker 2:I have none right now, unfortunately. So if anybody's out there, that is. As long as they're not funnier than me Anybody out there, that is. As long as they're not funnier than me, we're good as long as they're not funny. No, I think if I found a comedian, I think we could go on the road together. I love to be funny. They have to be compassionate. My faith is very important to me, so that would be a factor. And as long as they can cook, I can't say that enough because you know, in home health care there's a shortage of good cooks. Oh, interesting.
Speaker 1:Okay, yeah, okay. What are the challenges to dating, to building interpersonal relationships for those in the IDD world?
Speaker 2:Well, I think it's because and I think we were going to talk a lot about this a little bit about this too is that people with disabilities really struggle to get out, and that's because of lack of transportation. So, you know, if we could really work on that as a society, as if transportation could be made more readily available and we don't have to schedule it 30 days in advance, as opposed to maybe if we could schedule it 30 minutes in advance, then I think that would open up more options for us as those with IDD and developmental disabilities. I think that would open up more options for us not just to have more options as a dating relationship, but just, as you know, to be able to go to a restaurant when we're when we want to.
Speaker 1:Sure. So yeah, you've also got some advice out there for people who may encounter a relationship scam.
Speaker 2:Yes, First of all, don't send money, because I've done. I've done that a time or two. Don't send money. I don't care what story they tell you. You know if they're low on their heart medication, say you know, God love you, I pray for you, but I'm not sending $150 so you can get your pills refilled. I don't know you. And be very careful about these three words I love you. I know, especially with someone with a disability that struggled hearing those words growing up, those words, if you hear them from another person who invests time in you, whether that be, they just talk to you for 30 minutes and you've never had that before. So you want to be very careful.
Speaker 1:Can you also talk about the importance of relationships, whether it's a friend, a partner, a spouse it can be anyone, but just the importance of relationships, especially for those with a disability, because you hit on something else that's important earlier and that is there's isolation, especially with people with IDD. Talk about the importance of these relationships.
Speaker 2:Yeah, and I would even go back a little bit further as far as the dating. Just because we're disabled does not mean that we're going to want to automatically date someone in that particular group. And I would say, people with disabilities tend to find ourselves in a bubble, because you have special education, you have the special Olympics, so and I think a lot of the reasons able-bodied people struggle having relationships with people that are disabled is because we're not around each other enough. There's the Special Olympics, there's special education. Yes, we need those things, but we also need to integrate more with people who aren't disabled so we can the both of us can get a taste of both worlds.
Speaker 1:So, nick, if we've got a listener or listeners, an organization or corporation that's listening to this podcast and they haven't quite made the jump to maybe volunteer or get involved with IDD communities out there, what's your pitch to get them to jump in?
Speaker 2:Well, one of the things that people with disabilities crave, which we've talked about in the last few minutes, is relationships group of people who love us hard, who love us passionately and who doesn't have that wall up of emotion. I can't speak for all people with disabilities, but I can speak for myself. I am someone who loves passionately and who loves hard. So if you're looking for a group of people who want to jump in and volunteer in your organization or have a paid position, there's not a group of people that I believe that really want to work harder and contribute to their community than the disabled. So if you want to get involved with the disabled community, I would say for the state of Ohio, contact your local county board. We have 88 of them. Contact your local county board, see if you can get in with the service coordination branch of your county board and say what can my organization do to be more involved with the people in this organization?
Speaker 1:Nick, thanks for being here.
Speaker 2:Absolutely.
Speaker 1:This has been a whole lot of fun and again remind our viewers one more time where they can find your podcast.
Speaker 2:So the Nick Speaks podcast can be found at Apple Podcasts, Spotify, YouTube, and you can also email me at Nick Speaks Official N-I-C-K Speaks Official at gmailcom.
Speaker 1:All right, nick, come back anytime, okay.
Speaker 2:Absolutely.
Speaker 1:All right To our listeners. Thank you as well. Don't forget you can be part of episodes to come. Email us your questions or comments at podcast at iamboundlessorg. This is Boundless Abilities brought to you by Boundless. Thank you.