Nathan Perry started drinking in his 30s to mask problems in his relationship with his parents. Eventually, he realized he didn't have control over his alcohol use and he started a long road to recovery. With a lot of support from his family, Nathan has now been sober for 8 years. In this very personal episode, Nathan, his brother, Brad, and his sister-in-law, ICI Director Amy Hewitt, talk about their journey. We also hear from Mark Olson, a former supervisor of Nathan's. The family and Nathan candidly share the false starts and early mistakes made when navigating the intersection of substance use disorder and disability, as well as the lessons learned and the successes celebrated. Their articles in the latest issue of Impact are available here and here.

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Janet Stewart

Welcome to Impact the Conversation, a podcast of the University of Minnesota's Institute on Community Integration. It brings you strategies and stories advancing the inclusion of people with disabilities. Our guests are the authors of impact, our long running magazine that bridges the research to practice gap with professional and personal reflections on what matters most in disability equity today. I'm your host, Janet Stewart.

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Janet Stewart

Do you know someone with disabilities who also struggles with addiction? Then the latest issue of impact is for you. Articles break down the current research into what we know about the intersection of disability and addiction, and what we need to do as a field to create better treatment options. Today I'm talking with Nathan Perry, someone with disabilities who's in recovery.

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Janet Stewart

Nathan served as an editor for this impact issue, and he also wrote a very personal story about his addiction and recovery. He's joined in the studio today by his brother Brad and his sister in law, Amy Hewitt. Doctor Hewitt is also the director of the Institute on Community Integration, which publishes Impact. Welcome to all of you, and thank you for being here today.

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Janet Stewart

Nathan, you sharing your article about how addiction came into your life and how after several attempts, you have stayed sober for eight years. And congratulations on that, by the way.

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Nathan Perry

Thank you.

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Janet Stewart

Can you share with us, just very briefly, a little about how you first knew that this was something that was going to be a battle in your life? And and then a little bit about the recovery.

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Nathan Perry

Well, I think that, as I stated earlier, when I, was first seeking treatment, for, addiction, I wasn't taking it seriously. I, still, in my mind, thought that I had it under control and went through the emotions, like when, you know, my drug and alcohol counselor asked me, you know, if I drank at all, and I said no.

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Nathan Perry

When? The night before I drank, you know, and it took, four treatments to, to get it under control. When I got to the third treatment, I started realizing that maybe I do have a problem, but still went through the motions. And then during the fourth treatment, I accepted that. Yeah, I do have a serious issue, and that I had to take it seriously and, make it work for my health.

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Nathan Perry

And for, living with the family and everything.

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Janet Stewart

Now, what you talked about is very similar to what everyone in recovery talks about. It's very common for anyone who is in recovery to have relapses. So that's no different with or without disabilities, are there? But are there things that you think would have been more helpful, if you had had access to them? Something that was a little more informed about disability?

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Nathan Perry

Well. Going through my addiction and everything, I felt that, I felt kind of alone and isolated. Even though I wasn't alone and isolated is still felt that way. Because I still do not completely understand the mechanisms of addiction and was dealing with, some rather serious, personal problems, and with having a disability like autism, which I have.

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Nathan Perry

It can be very daunting and not understanding everything that is happening. Luckily, I had Brad and Amy, to help, steer me. But still, it was a real battle because, you know, I felt that, that I was alone, even though I wasn't alone.

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Janet Stewart

So a deeper understanding, maybe, of the actual steps to go through the recovery process, but then also addressing the other issues, like loneliness, for example, would have been helpful.

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Nathan Perry

Yeah.

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Janet Stewart

And then you also served as a, as an editor for this issue. And when we were talking about what we wanted this issue to be, you mentioned something that no one else did, and I was really impressed by that. But the idea of better aftercare once someone is on the road to recovery has it's not inactive addiction, suffering, active addiction right at the moment.

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Janet Stewart

The idea of following up with care long after, the recovery process starts. What what do you think is what would you have wanted in that realm?

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Nathan Perry

Well, when I was going through, recovery, going through treatment, one thing I noticed, and I did talk about, with my counselors, is that there really was no aftercare. You go in, you go through treatment, and then pretty much you're on your own. It's up to you to make connections on how to continue that.

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Nathan Perry

I did use AA and everything. But a lot of people that I have talked to also did not have really a firm path of where to go afterwards. So, I did go. I did have, success in AA. I was there for five years or so. Going, once a week to a neighborhood, AA meeting.

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Nathan Perry

You know, then Covid hit, and then it just kind of fell off the track because, they don't do it in person anymore. One of the things that, I did learn, and I have to keep a real close eye on is, environment and triggers and stuff like that. So I kind of had I kind of made my own tool kits on how to, deal with this.

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Nathan Perry

Whatever happens, I cannot shrink. My body won't tolerate it. My family won't tolerate it. So I have to seek other supports when I get upset.

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Janet Stewart

Amy, you've spent your career, dedicated to the self-determination and inclusion of people with disabilities in their communities. And things like dignity of risk are things that you believe in very staunchly. In your article, you talk about wanting to preserve that as you as you work with Nathan and try to support him in this recovery process. That can be really difficult to, to, to actually, you know, to say it is one thing to live.

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Janet Stewart

It is tough when you've got somebody going through addiction. You know, you talk about this in your article, but can you just sum up a little bit about how you did that and how you were able to preserve things like dignity of risk and, and preserve choices, even when your tendency might have been to, protect Nathan and not let anything, you know, not let anyone in or not let anyone be involved with them anymore.

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Janet Stewart

What what kind of went through your mind with that?

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Amy Hewitt

It's always challenging. And I think your statement was right on, like, it's it's easy to conceptualize and I have all these theories, but when it's you and your family's being affected, that's that's harder to sort out. It's easier to advocate for a full group of people. But one of the things we know is being person centered is critical in this field.

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Amy Hewitt

And that means the person, wherever they are and in whatever context they're in. And so for us, it's just a constant balance of here are the things Nathan wants to do or is doing. And letting him experience those natural consequences. And in in the case of his addiction, eventually it it became we were a natural consequence and his ability to live with us became a natural consequence because we just couldn't have that exposure with our children anymore.

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Amy Hewitt

It had gotten too far, gone too far. And so it is. It's just that constant. I we could talk about a number of issues where it's important for Nathan to be able to make his own decisions, and we need to be there to support him, but not to the extent that he can do whatever he wants that's gonna affect us or our family.

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Amy Hewitt

So it's hard.

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Nathan Perry

You know, I am eight years sober, but I feel incredibly guilty about what I expose my family to. And and particularly the kids. And I'm quite angry at myself for doing that. I wasn't involved in their lives a lot of times when they were younger and everything, and I resent it. You know, and, you know, just there isn't the kind of a day that goes by to where I kind of have a thought or two.

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Nathan Perry

It's just like, oh my God, why did I do this? You know,

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Janet Stewart

So forgiving yourself is hard, right?

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Nathan Perry

Forgiving myself is hard. I have not completely done that. Yeah, it's just going to take time. But I have real regrets about what I put everybody through.

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Janet Stewart

And the addiction didn't just hit at home. Nathan was working here at Eisai during this time. Earlier, Nathan and I spoke with Mark Olson. Nathan supervise her.

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Mark Olson

My main, main focus at that point was Nathan's health. And so, yes, there were there were work related pieces that I needed to make sure we're still being met. But I tried to lead with with the grace that could be led with and in support. Nathan, to to, you know, find his path that would work where he was dealing with his addiction and also getting his work done.

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Mark Olson

So it was, you know, there was a balancing act involved. And I want to I want to go back, Nathan, and just, you know, even before you came to me with the diagnosis, I knew something was going on.

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Janet Stewart

How did you know that, Mark?

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Mark Olson

Well, I mean, Nathan. Nathan, some of the things that that would happen is you would have some of that anger that would come out here in the office. I mean, we had instances where we had to talk about those things, you know, and, and, you know, oftentimes we could talk through it, you know, and there was increase in time you needed out of me to support you through that at those times.

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Mark Olson

But then the real indicator for me was if Nathan had a bad night the night before, he would show up and you could tell in his face, you could tell in how he was taking care of himself and that you were a little bit unkempt.

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Janet Stewart

And, Mark, how was it for you as a as an employer? That can be a tough road to walk. You're an employer. You're a friend. You want to to support Nathan at this time so much. And yet to the work has to get done. And you know, all the things that come with that. What was that like for you?

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Mark Olson

It had its balancing act. It became more difficult for me as Nathan supervisor, to get the focus where it needed to be.

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Janet Stewart

In the end, for Nathan, family support made all the difference. Brad, how's this been for you? Are you, You know, Nathan looks up to you and Amy. So much for all that the two of you have done to include him in the family and provide, you know, family leadership. In all of that with Amy, any thoughts kind of going through your mind about what you think really worked?

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Janet Stewart

Or maybe what didn't?

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Brad Perry

Well, I'll just comment on one of the things Nathan just said a moment ago about the feeling bad and feeling guilty, and he does. But when I hear Nathan talk about that, I have real concrete things that I say to him that he can do for the family that he be, you know, that would be helpful.

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Brad Perry

That isn't just like it's tangible things that he can that he can do. So he doesn't just, like dwell on feeling guilty, which kind of falls on us when he does that. We experience that Nathan's, you know, in a bad mood because he's feeling bad about himself. So that affects our family that way. So I like to redirect it to something like this would be really helpful, something concrete.

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Brad Perry

That's great families.

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Janet Stewart

That's great. And so do you think that builds everybody up when you and can you kind of make light of it and make some light.

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Brad Perry

Because Nathan doesn't always want to do those things. Yes it does. Well, if you're feeling bad enough, maybe you will.

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Janet Stewart

Take the trash out, right?

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Brad Perry

Yeah, that kind of thing.

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Janet Stewart

Okay, I that's great actually, because then and and then everyone's participating, right. What a great idea.

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Nathan Perry

And one of the things you know, that, you know, both Amos and Jack are adults now. And I really want to, Spend some alone time, but, and talk to them. And get to know them better. Amos and I are repairing our relationship. Amos just about had it. And so, it's going to take time.

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Nathan Perry

One thing that, you know, like I said, Amos and Jack were adults. They have their own places and everything. And I love to like, spend a weekend with them and show them that we can have fun and everything and don't have to worry about, oh, God, what's next? Or that sort of stuff. And I feel that, you know.

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Nathan Perry

They're always on guard. So I'm trying to navigate that. My own.

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Janet Stewart

And I know that's not easy.

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Nathan Perry

No it's not, it's not easy. Yeah. It's not easy.

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Janet Stewart

And be tough Amy, just with your work hat on now for a second, your policy hat in the issue. We talk a lot about the research, the intersection of addiction and disability. And we talk about some promising programs that are working in this area. But is there something from a policy standpoint that we can add or more of a systemic level that we should be looking at as a field?

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Amy Hewitt

I think what happens is we have these silos. We have mental health and substance abuse disorder in a silo, and we have developmental disabilities in a silo. And any time you're trying to get government agencies to come together with policy or to come together with services, it's hard and even with mental health. So if you think about Nathan, he has an intellectual and developmental disability.

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Amy Hewitt

He has a number of mental health diagnoses, and he has substance abuse, and is in recovery. So those are all different systems, totally different systems. And trying to get those systems to come together. Most mental health professionals aren't really trained to work with people with intellectual and developmental disabilities. Most people who work in the intellectual and developmental disability field know nothing about substance abuse disorder or bipolar disorder, or any number of things.

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Amy Hewitt

So it's really about coming together as entities that deliver services and trying to create policy and trying to create specialists that can cross over all of these siloed categorical groups of people who have needs that that they need support for. And and that's hard. We're super lucky in the Twin Cities area because we have very concrete, available, accessible, substance abuse disorder providers who specialize in supports to people with developmental disabilities and autism.

00;19;00;24 - 00;19;27;28

Amy Hewitt

And I think across the country or even across the state of Minnesota, those services just aren't available to people. So it's hard, as it was for us. We could wrap a lot of support and services around Nathan. So it's not just substance abuse services that he needed, but he also needed mental health counseling. And he needed his, supports for medication and decisions around medication.

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Amy Hewitt

And we had all that for him, as well as his day to day direct support, professional staff that are there to help him. And who stood by him in really, really, really challenging times, where he, he would become very upset and then take that out on his staff. In kind of rage is the word I would use.

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Nathan Perry

Yeah, I would, I would concur.

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Amy Hewitt

And his staff would that would be their time together would be just him yelling at them and being all angry and mad.

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Janet Stewart

But did any of them leave?

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Amy Hewitt

No. They are stuck with him. I think part of it is Nathan was mad about his circumstance, and so blaming other people and taking it out on other people was a pattern for a long time. And it took him realizing this is my issue and I've got to accept the responsibility for it. It's not every anybody else's fault.

00;20;28;29 - 00;20;58;00

Amy Hewitt

It's it's, you know, the cards he was dealt genetically because there's a strong family history of substance abuse disorder on his side of the family. And he had to accept that. And once he kind of could do that, things came around. But the other thing is, it is common for people to go through treatment many times. I mean, you hear, as you said, you hear that from a lot of people who who go through treatment.

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Amy Hewitt

I think the difference is conceptual. It's hard for people with intellectual and developmental disabilities to even understand it. I think of the 12 step program in AA that's pretty theoretical and it's it's very hard. And yeah, Nathan did go to AA, but there were a lot of fits and starts with that and a lot of different sponsors and long periods of time where he wouldn't have a sponsor or he get a sponsor, and then they'd sort of realize, oh, he has a disability and then they would just not respond to him and he'd have to start all over.

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Janet Stewart

That brings up a point I wanted to ask you about, because in putting the issue together, we did hear from from people both, writing personal stories and from some people in the field that adapting some of this treatment isn't as maybe difficult as what some substance abuse providers have sort of made it out to be. They sort of throw up their hands and say, we don't have people trained in this area, so we don't offer the service.

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Janet Stewart

And and folks on the ID side sort of said, well, that's not good enough. You know, we have people who really need these services. Is it is that just an excuse or this bias?

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Amy Hewitt

I mean, it's just bias and not wanting to change the way we've always done things so that it works for all people. It's no different than what you do to try to make content so that people with intellectual disabilities can understand it. Sort of a similar, similar concept that when you have to adapt things so that they work for people who have different needs and that just doesn't, doesn't happen.

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Amy Hewitt

And if you think about just think about the shortage of mental health professionals in general, substance abuse disorder professionals in general. And then we're asking on top of it to find people who can help support people with intellectual disabilities who also have a substance abuse disorder.

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Janet Stewart

I loved at the end of your article, when you talk about some of the lessons learned, and self-preservation being one of them, how do you how did you do that in your own in your own family? How did you make sure that the two of you were okay, your kids were okay? Any any tips or things that that, as you think back to the toughest times, really helped in self-preservation.

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Brad Perry

I think we did a lot of switching.

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Amy Hewitt

Just going to say tag team.

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Brad Perry

Tag team. Yeah. So one person was, you know, doing what they needed to do to renew themselves. And the other person would be on, you know, dealing with what was going on.

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Amy Hewitt

I mean, sometimes it was some 24 hours up to just making sure he was okay and dealing with police and ambulances. And if we both were doing that at the frequency that it was required, yeah, we would have been there for each other, but we would have burned out long before, before we did. So we always tag team and we've shared that with other families who have kids with complex needs to trade off.

00;24;13;28 - 00;24;22;07

Amy Hewitt

Trade off. You both don't have to be on all the time. And we kind of make that almost official. Like, this is your time.

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Nathan Perry

Yeah.

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Janet Stewart

Isn't it your time? Right. Yeah, yeah.

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Nathan Perry

Okay.

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Janet Stewart

So and I would ask you to if you want to any wrap up thoughts, but you know, if I guess I just wondered what you would say to someone with disabilities who thinks, either they or a family member might have an issue with addiction. Where where where would you tell them to start?

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Nathan Perry

Well, there's two things. One, they would need to properly get assessed. There's, there's all sorts of labels and all sorts of programs that, can help. So it's very important to, find out what the, what the needs are for the individual, and match them up with the best services possible. One of the things that, was found out is that one of my problems was I had,

00;25;32;10 - 00;26;07;18

Nathan Perry

Emotional mood dysregulation and that kind of need to be worked on before, dealt with the treatment process. So getting that assessment and everything then and a top to a, therapist on top of a drug counselor is vital for both of them to communicate to find out exactly what the individual needs.

00;26;07;20 - 00;26;32;07

Brad Perry

That hasn't been mentioned. And I don't think it's, you know, very popular in this country, but you want to look at all the tools that you have available and resources to. And one of the things that was really helpful with Nathan and for our family was, was an abuse. And that really at times when he was at his worst, that was what kept him on the, on the straight and narrow.

00;26;32;09 - 00;26;54;14

Brad Perry

But being able to live at our home still and Nathan's done great work with AA and counseling and and all that. But there were times with the impulse control that if there was a really bad day, all that could be out the window. And that's when the an abuse, you know, really help to drinking. So yeah, I don't know if you want to say any more about that.

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Nathan Perry

Yeah I will I've been on an abuse for. Long a long time. Eight years since the last relapse. And I do at times. In fact, today was one of them that I was like, man, I really would like to talk to Brad name about getting off and abuse. I'd been eight years sober, but part of me was like, yeah, but.

00;27;27;24 - 00;27;40;16

Nathan Perry

If things were to hit just just right, and I was not on that, it would be kind of tempting to drink some, like, leave it alone. Just leave it alone.

00;27;40;18 - 00;27;42;02

Janet Stewart

It's still a tool. That's work.

00;27;42;02 - 00;28;07;19

Amy Hewitt

Yes, I would add we didn't hide any of this from people, but that's a that's a tip for other families. It's so common for people to hide their problems. And we we weren't willing to do that for Nathan. We weren't going to hide that he was struggling and that it was affecting us. And so it really opens communication and opens expectations.

00;28;07;19 - 00;28;11;06

Amy Hewitt

So we never hit it from our kids. You couldn't hide it?

00;28;11;08 - 00;28;12;25

Nathan Perry

No, no, I said, I think.

00;28;12;25 - 00;28;14;15

Brad Perry

All the neighbors knew they heard it.

00;28;14;15 - 00;28;14;27

Nathan Perry

So.

00;28;15;03 - 00;28;47;20

Janet Stewart

But still you can you can act like you're in denial and that and that you chose not to do. And and that really actually brings me to wanting to thank all three of you for the candor that you showed in putting these articles together for our readers. Both you serving as an issue editor and writing your story gave us the opportunity to put together a magazine and then to go out and find other people with the expectation that they would share, some difficult stories as well.

00;28;47;23 - 00;29;08;12

Janet Stewart

And they did. And we didn't have a single author request, you know, not using their name. And we didn't want to create that as a, as an expectation in the magazine because we wanted to say this is not something to hide away and be embarrassed about. This is this is something to share and to show leadership in.

00;29;08;12 - 00;29;12;09

Janet Stewart

And and you've done that, all three of you, in your own way.

00;29;12;09 - 00;29;34;27

Amy Hewitt

So and there's really no reason, if you think about it, people have substance abuse disorder. So why would anybody think that people with intellectual and developmental disabilities don't also have the same risks, the same opportunities and the same issues? So exactly, people need to know it's it's real and it happens and you can work through it.

00;29;35;00 - 00;30;03;03

Nathan Perry

I think one of the worst things to do to an individual, is for a family to hide it and ignore it. So just this doesn't go away, it just gets worse. And with my issue, it was impossible to hide the entire neighborhood heard me. You know, when I when go off and all that kind of stuff.

00;30;03;06 - 00;30;07;05

Brad Perry

So I don't even quite know how to describe that exactly.

00;30;07;10 - 00;30;34;16

Nathan Perry

I'm not going to describe it because it's too graphic, but it just, you know, it needs to be brought out into the open and it needs to be brought out into the open respectfully and not to be used as or seen as a shame or a weakness. That's very, very important.

00;30;34;18 - 00;30;50;15

Amy Hewitt

And I you know, what Recovery's done for Nathan is it's brought back his laughter. He's very funny. And humor is a way that we've always gotten along and survived as a family. But when he was actively using, there was no laughter, there was no humor. It was all anger.

00;30;50;15 - 00;30;57;18

Brad Perry

He was not Otus from The Andy Griffith Show, that happy town drunk at all. No, that wasn't that wasn't Nathan.

00;30;57;20 - 00;31;01;25

Amy Hewitt

But I think that's it's nice to see the humor back.

00;31;01;27 - 00;31;25;04

Nathan Perry

That's great. It's nice to hear that from you. Still, there's a hell of a lot of work to, to continue, you know, but I think I've made pretty significant progress. So. And I always have to keep my guard up. Always.

00;31;25;07 - 00;31;35;16

Janet Stewart

Thanks for joining the conversation. If you'd like to reproduce all or part of this podcast, please email AISI Pub at Edu.

00;31;35;19 - 00;32;49;29

Pete McCauley

Our show is co-produced at the University of Minnesota's Institute on Community Integration by Impact Managing editor Janet Stewart, and AISI media producer Pete McCauley. Skyler Mihajlov is our editor. Graphic designers are Connie Burkhart and Sarah Curtner. For more information on the Institute and all of our products and projects, please visit ISI. N Edu.