Episode 8 with Jon Meyers Transcript



Keith: This episode contains mentions of nursing home abuse and neglect. Viewer discretion is advised.


Keith: Welcome to Disability Empowerment Now. I am your host Keith Murfee-DeConcini, and I am here talking with my good friend John Meyers. Jon welcome to the podcast.


Jon: Thank you very much Keith this is an absolute pleasure.


Keith: So we met several years ago when I was involved with Arizona LEND. Arizona LEND is Leadership Education in Neurodevelopmental Disabilities. I think I am remembering that correctly and we met at several of their seminars especially the policy seminars in D.C. So that’s how we met. So tell the listeners what motivated you to do the work that you do for such a long time. Take us back to what motivated you to get into the field.


Jon: Well at the risk of sounding entirely mercenary what motivated me to get in the field was actually just the need for a job. I came into the disability field having spent close to 25 years in the non-profit field. Kind of a variety of different non-profits, health and human services, animal welfare, education, you name it, the arts, I started in the arts. Around the middle of 2013 I was just looking for a new position and the Arc of Arizona, which is an organization that serves people with Intellectual and developmental disabilities happened to be looking for a new executive director. Now I knew what the Arc did, I knew that it had been around for decades. I remembered it from when I was a child. I was familiar with the cause, but I didn’t really know the ins and outs, the nuances of the work being done by the organization.

Nevertheless, I applied for the position and I was hired and, and that started what I could not have foreseen. As a journey that’s now almost nine years long and has really enveloped me, really grabbed me. It’s a journey that I absolutely want to continue. There’s no question about that, but it’s, it’s strange to think that I came into this particular field almost by accident and have found a home here.

And I can’t quantify it. I can’t even necessarily qualify it. I don’t come from a disability background. I don’t have strong attachment through family members or others that I know to down syndrome or autism or cerebral palsy or any of the other things that fall under this umbrella of intellectual and developmental disabilities.

As soon as I was in my position with the Arc of Arizona, I knew that I had found something that I could, that I could also embrace that embraced me and that I could embrace and that I could see making a difference in people’s lives, whether through public policy, through programs, through special events, whatever area of work I was involved in, I knew that I could touch people’s lives.

And more importantly, I knew the organization I represented could touch people’s lives.

And I have recently left the Arc of Arizona. I’m now executive director of the Arizona Developmental Disabilities Planning Council. I can say without reservation that had I not worked for the Arc, I would not have gotten this current opportunity.

But this is just another step in that progression, another means of helping to make a difference for people with disabilities across Arizona. And, you know, as part of the larger community of advocates for people with disabilities, maybe even helping make a difference on a national scale.


Keith: Well, that’s quite a refreshing answer. One I didn’t expect and so far as, I am used to hearing the angle of a personal connection to disability and the disability community, I don’t really hear many people who just, like you said, just got into serving the community because you needed a job, and before that you have various other jobs and fields of course, and you’ve been advocated on behalf of the disability community for almost a decade. And it doesn’t seem to be a job for you. It seems to be a passion, which again is gratifying to hear. I would just expect that passion to come with a personal connection. Not that I am sad that you don’t have a personal connection, I just wish there were more people like you who just fall into supporting and advocating for the community and find a hole in doing what they do. And so that’s very gratifying to hear, I don’t know if I had known that part of your history, so that was very great, and I am very grateful to hear your origin with advocacy.


Jon: Yeah, well, you know, it is a very surprising thing and it’s not a surprise to anyone. We tend to gravitate toward the things we know and the things we love when we’re seeking work or when we’re involved in our communities or in, you know, in community activities. So coming into the disability field again, without any real background in it was, it was certainly eye opening to me and I probably should have anticipated it, but I didn’t that the work being done was in large part being done by either people who have disabilities or family members, caregivers, the folks who are closest to people with disabilities.

It’s easy if you’re like me and you’re not in that position, it’s easy to, in a way, feel like an outsider if you allow yourself to, but I’m here to tell anybody who’s interested in working in the disability field, regardless of who they are, that there is no reason to feel like an outsider, whether you come from a position of being person with a disability or being a caregiver for someone or a loved one, if someone, or like me not having that kind of background, it doesn’t matter.

There is no exclusionary attitude. It is all about inclusion, and of course that shouldn’t surprise anybody either. So the battle for civil rights for people with disabilities over the last five or six decades has been about including. And so it’s only natural that, regardless of where you come from, when you come into this field, when you do this work, when you are an advocate for people with disability, you are included, you are as I said earlier, you are embraced.

You are one of the fold and, and you have an opportunity to work alongside all these other amazing folks, all these other people who dedicate their lives to this work and everybody is welcome. Everybody can make a contribution.


Keith: Very well said. So you mentioned that you were until very recently a week and a half ago I think the Executive Director of the ARC of Arizona, and that is the position that you held throughout the times that we met in person. It feels like a lifetime ago to be honest, that is what collective trauma will do, but anyways. You seemed very relaxed and dare I say extremely confident in that position. You seemed to know your clientele and the ins and outs of advocating for them. Was it hard to leave that position to say nothing of your current position, but you held that job for almost a decade, and so what was that process like?


Jon: Well, The answer is yes and no. Yes. It was hard to leave that position. When you work for the government, you certainly have more constraints on what you can do. One of the beautiful things about working for the ARC and organizations like it is that you can engage in, and I don’t want this taken the wrong way, but you can engage in a more aggressive form of advocacy.

In fact, much of what I did with the ARC of Arizona was lobby, advocating on behalf of specific legislation. Never, you know, taking a stand on candidates that crosses the line, but we could advocate on specific legislation we could sponsor or introduce to sponsors specific bills to ask them to then shepherd those through the Arizona legislature.

That’s a freedom that I don’t have working for the DD planning council, because it is a federally funded agency. And, you know, you can’t engage in quite that level of advocacy but still, and I’ll talk about that in a minute, there’s still a lot of work that could be done on the advocacy front. You know, leaving an organization that offers that kind of, or a position that offers that kind of flexibility and freedom and the opportunity to speak out and speak forcefully on issues.

There’s something to be said for that. And it can be a difficult adjustment, at the same time, there is an opportunity to move to a position like the one I have now to make a difference, and in some cases, greater impact. I hope anyway, if I do the job right, to work with a larger number of people, because the DD council is a grant making entity to provide resources to other organizations in order to help them fulfill their mission.

And in so doing, fulfill the mission of serving and advocating for people with disabilities across the state. You know, in some cases the roles are very much alike in the sense that we will still advocate, or I will still advocate on particular issues, advocate for the need for, improved funding of services in Arizona for, uh, better protections for at-risk individuals.

As you know, we’re, we’re those of us who’ve lived in Arizona for the past three or four years are intimately familiar I think, with the Hacienda incident in which, there was a sexual assault upon a resident of an intermediate care facility and a resulting pregnancy, and it just brought to light things like the epidemic of sexual abuse and sexual violence against people with disabilities.

That’s something that we will continue to work on. Something that we will continue to fight for better protections around. There’s no question about that. So there are some great similarities between the roles. There are some great differences, but, you know, after my tenure with the ARC it was, you know, it was nice, it was refreshing to see a new opportunity and to see ways in which that new opportunity could compliment and in some ways, I guess supplement the work that I had already done and allow me to pursue some new directions and still stay in this field and still play a role working alongside disability advocates and self advocates.

This is kind of a field that doesn’t let you go. This kind of work when you start to interact with these advocates themselves advocates. When I had a chance to meet you, when I had a chance to sit in conference rooms on Capitol Hill and hear you talk to representatives of the house and the Senate.

I mean, I can’t tell you how inspiring that is. That is a rare privilege in somebody’s professional life. So, you know to just have that feeling, to know people like you, to know other colleagues who are telling their stories and who have such passion for making a difference for bringing about improvements in disability services and in disability and civil rights for people with disabilities.

Um, you know, I cannot tell you how grateful I am and how privileged I feel to be able to be in this position.


Keith: Well, I’m very humbled by hearing that I was able to make such an impact on you and your own advocacy when we were up at the Disability Policy Seminar. I am looking at my lanyard right now, I have it hung on my cork board office wall all those years ago. You are right, this type of work, while it is grueling at times, you are absolutely right, it does not let you go. Of course we are speaking about it from two different sides, but I mean the advocacy part, no matter how you approach it, we still want the same thing. Horrific incidents, like the one you just mentioned, should never happen, one its one time too many,and unfortunately that incident is by no means an isolated case, but that was horrific nonetheless, but I mean fighting and advocating for people that you might never meet personally, has to be some of the most gratifying work a person can do.


Jon: Well. There’s no question about that. There’s no question about that. What’s interesting about this is that, you know, we often don’t see the immediate results of the work we’re doing. We sometimes, you know, especially if we’re working on federal issues, things that take place in, Washington, DC, first of all, they primarily happen at a glacial pace and it can often take years or a decade, to bring about and think about, you know, the Americans with Disabilities Act, which was passed in 1990, how many decades were spent trying to get legislation even close to that passed by Congress and how many decades now have passed in really trying to see that fully implemented.

So it is work that takes a long, long time sometimes to do now, occasionally at the state level, we can see more immediate results. There’s no question about that, but even so. The lead up to most legislation that gets passed at the state level is several years in the making. Then implementation can often take time.

So you often don’t see immediate results from the work you do. And as you said, you often never meet the people who are affected by it, but, you know, that people’s lives are made better, that people’s lives are improved. The frustrating part is that it just sometimes doesn’t happen to you, you realize that the need is so immediate and getting something in place today or yesterday could make such an amazing difference for people.

And you just know that it’s, it’s not always going to work that way. It’s rarely going to work that way, but if you keep at it, if you’re persistent, if you’re doggid, if you have faith, and I’m not talking about in a religious sense necessarily, but if you have faith that things move in the direction as Martin Luther King said that the ARC of history bends toward justice or something like that, I’m kind of paraphrasing, but you know, that things move in the direction of what’s right.

Uh, you can be successful and you can help quite a few people to realize better circumstances in their lives.


Keith: Yeah. That is very well said. So let’s go back to telling me and the listeners out there, what about your new job, certainly there are differences in the way you can and cannot operate, but are there any similarities? Are there more differences? I mean I know it is a grant type of organization whereas the ARC wasn’t. Tell me, stepping into this new role for you, what are you looking forward to the most, and what do you wish you could bring from the former position you won’t be able to do again, as aggressive advocacy, which is a very abphrase by the way considering that I know your type of aggressive advocacy. You really pointed in what you’d say which I have always respected, in-so in talking about this new position, which you are just getting you feet wet into, which is a weird phrase, what are some benefits and what are some things you wish you could do that you could for the ARC that you can’t necessarily do in this role. And for people listening, who don’t understand or know about the council’s law, tell us a little bit of history about the organization.


Jon: Well, to start, I think with the first part of your question, what are some things that I could do with the arts that I can necessarily do?

Well, I guess I would just say the major difference between my prior role and this role, I think is one of flexibility, but that isn’t, I mean, but I mean, not in a very neutral sense in my prior role, I had a lot more flexibility to, as we’ve just talked about to lobby, to advocate, in a way that is a little more aggressive.

But it also had opportunities to develop relationships and develop collaborations in a more rapid and, and less structured way, sometimes very structured but the development could take place in sort of if you will seat of your pants way or in a more informal and organic way, things with the council are much more structured.

We have a work plan that is in place. We have to submit information to federal agencies on a regular basis. We have to keep the feds informed of changes that take place. We have a process for just about everything. So, I guess maybe, maybe that’s the best way to define it, you know, with the ARC things were not quite as process-oriented things with the developmental disabilities planning council are very process oriented.

That’s not necessarily good or bad in either sense, coming from the ARC, and this is not meant to be critical of the ARC, but my position with the ARC of Arizona, it was basically a one and a half person organization. I didn’t have staff other than a part-time Executive Assistant, who also works for the ARC of the United States.

So she split her time between supporting our Arizona operations and supporting the Board of Directors for the ARC of the United States. So we were trying to do a tremendous number of things with very limited manpower. And we were trying to represent the IDD community across the entire state, you know, until somebody figures out a way for one person to be in more than one place at one time, there always are going to be limitations on how successful you can be in a situation like that.

You know, I was responsible for doing the lobbying, the fundraising, the outreach, the programs, the collaborations with other organizations, the projects and events. It’s quite a load for a very small staff to take on. A wonderful thing about the council is that we have five staff.

And so some of those responsibilities are spread out. Another wonderful thing, and you know, it’s just because we’re federally funded, we don’t have to do fundraising. And as anybody who works in a nonprofit organization knows, one of the biggest consumers of time and effort is fundraising. And it’s just the nature of the beast.

You know, you’ve got to raise money in order to support the things you’re doing. In our case now with the council, we receive an allocation for the federal government every year. And that makes things a lot easier. We can focus on our activities and our mission without having to be overly concerned about where the money’s gonna come from to pay for that.

Now, I understand what that does is that creates a very heavy responsibility on us because we are using taxpayer dollars. That requires us to be very careful, to be very conscious of where the dollars are going to ensure that whether it’s for a grant or contract or for staff or for some other activity, we are using those dollars wisely.

And I take that responsibility very very seriously. We, going back to that issue with things being process- oriented, the process for determining grant recipients is very rigorous and some might say that it is bureaucratic in a way, that might be true to an extent, but the point is, again, we’re using the dollars of you and me and every other taxpayer out there in order to fulfill a mission.

And we have to be careful and we have to be cautious and we have to take that responsibility seriously. So, you know, I’m sort of babbling, but you know, there are differences that are not necessarily good or bad. You know, with the council, we just have this opportunity to do so many things because we can contract or grant to other organizations to collaborate with us to do the work that they naturally do, that is part of their mission, but it also feeds into what we’re trying to achieve. And among the things that we’re trying to achieve at the DD council is better understanding of the disability landscape, better understanding of how services and supports, policies, funding, you name it, how those things affect the lives of people with disabilities.

Are they contributing to people’s lives? Are they helping make people’s lives better or are they presenting barriers? Are they not going far enough? Are they not, in fact, improving people’s circumstances, but in some way are either holding them in place or perhaps in the worst case scenarios, setting them back?

So understanding, gathering data, doing research, working with professionals in the research environment, whether at our state universities or at other research organizations to gather that information and do a better job of understanding the lives of people with disabilities and the impact of services on them.

That’s a really central focus of what we do. There is, you know, also fundamental to what we do, the promotion of self-advocacy. This praise we hear often in the disability community, nothing about us without us. That is, that should be emblazoned, I think everywhere in our offices and everywhere on our stationary and everywhere, you know, on the pockets of our shirts or whatever, because that is a notion that cannot be separated from what this DD council, and I think other DD councils around the nation represent.

And by the way, we are one of 56 developmental disabilities councils, some have slightly different names where the Arizona developmental disabilities planning councils, others have slightly different names, but there are 56 of them, one in every state and territory of the United States.

So we are among a network of agencies, all promoting self-advocacy and the ability. And, and, and the power of self advocates to speak out for themselves. And the obligation that society has to listen, to hear their stories, to hear about their needs, to hear from self advocates, what makes a difference to them and what will help them lead more self-determined and included lives. Far, far too long have we disregarded the voices of self-advocates and in recent decades, fortunately, we’ve reversed that course and we are listening more and more now, but it still isn’t enough. There’s still our miles to go before we are fully inclusive of those voices. So that is something that really is inseparable from what this DD council and others stand for.

And then of course, there’s complimentary to that, there’s the notion of advancing inclusion, making sure that individuals with disabilities are no longer set apart and are no longer even thought of as separate from the community of people who don’t have disabilities. In fact, we just have to look around to realize, or, you know, for those of us who are, who are aging, we just have to feel what our bodies feel like to realize that that disability of some sort is something that’s probably going to happen to us, to every one of us at some point in our lives.

So why do we think of people with disabilities as somehow apart from the rest of society, they are an integral part. They are, we are all of us, part of one community, part of one society. We have an obligation to each other. We have a responsibility, I think, and I, and I hope this is taken in the right way, to move disability into the mainstream. No longer should conversations take place where we think of, okay, here’s what all the people without disabilities need.

And oh, by the way, let’s fold in this program or that program to make sure that people with disabilities are taken care of.

No way, no longer. From now on, we have to say, here’s the body of our society. We need to think about all of society in the things that we do moving forward. No one should be excluded.

No one should be accepted. All people should be included. And that is a fundamental part of what we do at the council, as well as promoting that inclusion and making sure that when, when our policy makers in particular are debating issues, and this can be elected officials or, you know, agencies, and they are considering proposals when they are considering policies and rules, they have to take into account, all of the people they represent, not just the people who don’t have disabilities.

Sorry to be so long-winded, but there is so much work ahead of us. There’s so much that has been done. And then the incredible people who have brought about such improvement in the past 50 years or 60 years, but there is still so much to do.


Keith: Yes, my friend. Now your long-windedness as you put it, is absolutely spot on and appreciated. If anything it gives the listener a sense of what I experienced when we were prowling for the lack of a better word, the house and senate of this country together. But yeah, getting back to how we met, awkward transition aside, certainly in your former position you could do that, and you were involved in the Disability Policy Seminar put on by Arizona LEND for a number of years. In this new position are you able to do events like that or do you have to shift gears in how you present yourself and the council because you are federally funded.


Jon: Well, one of the beauties of this new position and end of the work done by the council is that it doesn’t exempt us from or exclude us from being able to participate in things like the policy seminar. Remember back to when we visited those representatives and those senators, we were talking about issues.

We were talking about education and we were talking about social security and transportation and housing, but we weren’t there well you know, we were there to talk about certain legislation that was being proposed, but we weren’t there, or at least some were not there necessarily to take a position on that legislation.

I was because I was with the ARC at that time. With the council, we can still talk about issues. We can talk about the need for better transportation options, for people with disabilities and better housing options and more respect in the education environment and better long-term education opportunities.

We can’t promote specific bills. If there is legislation before the house or the Senate, we can’t take a position on that, but we can still talk about in more general terms, we can talk about the need for improvements in these areas. So that, fortunately , is something and if I had gotten into this new position in time, I would be attending the disability policy seminar this year, which is actually happening next week in Washington, DC.

Unfortunately, that timing didn’t quite work out, but I anticipate that in future years, I will still be attending that. So, in fact, one of the mandates for disability councils is, or developmental disability councils is that they be advocates. We have to speak out if we’re not speaking out, we’re not doing our job.

So we need to, we need our voice to join that chorus of other advocates and self advocates across the country and in our own states, talking about these key issues and impressing upon our policymakers the importance of addressing them. I’m really grateful for the fact that we can do that work.

And it’s not just the policy seminar, it’s every other aspect of life. And one of the other great things about the council is it is such a repository of knowledge, such a repository of information. If you go onto the Arizona, DPC website, you’ll find policy briefs, you’ll find reports going back a decade, and this is all information gathered by staff or by contractors or by grantees related to the disability field because the council is such a repository of this information, the council is also looked to by policy makers for education and insights and information.

And my predecessor was a great example, although again, she couldn’t take a position on legislation after the Hacienda incident, she was immediately looked to for her counsel on issues related to abuse and neglect of vulnerable adults or at risk adults.

She served on a special subcommittee related to protection of vulnerable adults in Arizona. And I don’t want to be, I want to be careful. I want it to be understood. We can be involved in the political process. We can be involved in advocacy. We just can’t cross that line to take a stand on certain legislation, but that’s okay.

That still gives us a tremendous amount of power that still goes to those a tremendous amount of opportunity for our voices to be heard. And remember the DD planning council, Arizona, DD planning council has a membership as our board essentially is 23 individuals, advocates, self-advocates, representatives of state agencies, community stakeholders, representatives of other disability advocacy organizations.

That’s an impressive group of people. And I mean that when I say this, this group of people is impressive in their knowledge and their willingness to speak out and their willingness to represent the disability community, and so that’s even greater influence because they are spread across the state, their voices can be heard in their local communities.

We have this kind of privileged position in being a body of people who know disability issues, who live with disability issues and who are looked to for their expertise on disability issues.


Keith: Well you certainly know your stuff particularly about the new job that you just entered and the history of the council and why it can be extremely effective but in a slightly different way than the ARC, but I mean the history and the network of councils that you mentioned a few minutes ago, one in each state I believe, that is very very impressive. Do you know how often the network interacts with each other on big issues and small issues. Is there a lot of cross-talk in the network?


Jon: That’s a question that I can’t answer fully. I can only answer in part and, and, and I can tell you that, that based upon my inbox, my email inbox, there’s a lot of coordination, cooperation, interaction between the directors of the different DD councils around the country, because I’m, every day I get probably a dozen or more different messages on list serves from other directors from the Administration on Community Living, which is the parent organization of the DD councils from the national association of councils on developmental disabilities, which is sort of our I don’t know if trade association is quite the right word, but it’s the national, non-governmental entity representing the councils. I mean, there is a lot of communication going on between the councils.

As to how many times the different representatives get together, honestly, I don’t know that I, I I’m, I’m still so new in the position that I haven’t fully learned everything, but I assume there are opportunities and because, NACDD the National Association for Councils on Developmental Disabilities, because that is part of the planning group that puts together the disability policy seminar, I assumed that at a minimum, DPS is one of the events, you know where representatives typically get together. I hope there are more opportunities because I know for a fact that there’s a lot I need to learn and you know, I come into this position, having worked pretty closely with the Arizona council, through my tenure with the ARC, because we received grant funding from them because we were involved in projects.

I was involved in the, and continue to be involved, obviously in the, the abuse and neglect, or the sexual violence and IDD collaborative, which is an entity formed by my predecessor after the Hacienda incident, in order to address some issues for the disability community, a whole variety of different things that I was involved in, where the council had a role.

So I, you know, I come into this role knowing the staff, knowing the other partners in various circumstances and various programs. But what I don’t know are representatives of councils from other parts of the country. So that, and some of the ins and outs of you know, the financial management of a council and other requirements that come down from the feds, those are things that I still have to learn. And so I’m hoping there will be lots of opportunities to interact with, with my colleagues, my peers, from around the country.


Keith: Indeed. It’s really gratifying to hear about the board of trustees being so diverse in background because you would be surprised or maybe not as surprised, by how unfortunately rare that a board both serving and overseeing a community is as diverse as the council board is.

I am thinking of other boards, well it is just people, and not to demian this people in any way, but it is all people with PhDs or other specializations, and there are hardly any self-advocates or people without lovely titles and I mean, it is really gratifying to know that there are boards out there that are incredibly diverse as the communities that they serve.


Jon: Well, you are too right on that point. There are an awful lot of boards that are sort of monochrome that don’t fully represent their communities.

The diversity on the Arizona DD planning councils board is intentional. We could not claim to be representative of the IDD community or the larger disability community, if we didn’t have the kind of representation, we have not only from self advocates and advocates, but from the people who serve.

Whether those are provider agencies or advocacy organizations like the Arizona center for disability law, you know, and the university centers of excellence on developmental disabilities that you said at Northern Arizona University and University of Arizona, I mean we have to have those voices in the room or in this day and age on the phone, hopefully in the room again before too long.

But you know, if we didn’t have such a variety, we would be lying to ourselves and we’d be lying to others about our true representation of the disability community. And we can’t do that, that that would be morally wrong. So I’m proud of the diversity of this council.

And I am really excited to work with every single member of the council to keep the momentum going, that the council was built up over the years and to keep realizing the kind of success that we’ve been fortunate to realize in recent years.


Keith: Do you know if the board has any openings because I am running through a list of advocates in my head right now as we speak.


Jon: There is in fact one opening on the board right now.

And I should point out that, uh, membership on the DD planning council board is through the Arizona office of boards and commissions, which is part of the governor’s office. So the appointment actually is made by the governor. People are vetted by the boards and commissions office. So there is one opening on the council right now.

And if a person is interested either in being considered in the near future or being considered at some other point of time in the future, they should just go on the boards and commissions website and fill out an application, and indicate that they want the Arizona developmental disabilities planning council.

And there can be a little bit of confusion because there is another advisory board known as the Developmental Disabilities Advisory Council. The DDAC as opposed to the DDPC. The DDAC is also appointed by the governor, but that is a body of volunteers who just provide advice to the governor’s office.

It is not a federally supported or federally mandated organization, like the DD planning council. So anyway, just be aware, but go in and fill out the application, submit that. And the great thing is boards and commissions communicate with us at the council very, very frequently. So they let us know when applications come in and it gives us an opportunity to review them.

There are typically a couple of openings every year; openings tend to occur primarily around September. I think most people’s terms tend to run September through August and they’re two year terms. Uh, this is probably more, there’s probably a lot of minutia here and probably more information than you really want, but, but basically if somebody is interested in serving on the council, start with the boards and commissions website and, and we’ll have a chance to review the information and get back in touch with those folks.


Keith: So you mentioned you said Sonoran Centers for Excellence around Disability and the Sonoran Youdaf overseas Arizona LEND, which is how we met. Given the council’s law, how often does the council interact with organizations like Sonoran Yousaf. Is there a long relationship there?


Jon: Yes, there is a longstanding and very, very active relationship between, the north Sonoran Yousaf in Tucson and the Institute for Human Development in Flagstaff and I should give just a little bit of background. University centers of excellence on developmental disabilities are also federally funded.

There is at least one in every state and in Arizona, we’re fortunate enough to have two, one at NAU, one at U of A, and not only are those two Usaids represented on the council. The executive director of both of them is a member of our council. But we also fund projects in collaboration with both of the U sets.

That’s not a requirement that just happens to be the case because they offered the best proposals for different projects that we had issued RFPS for over recent years. They do outstanding work. They are, you know, just another component of what we call the DD network and all of the federally funded agencies, d those are, you know, the, UCEDS, um, the DD planning council, and the center for disability law and, and, or the, the protection and advocacy organization in Arizona. That’s the Arizona center for disability law. These four entities form what’s known as the DD network. And there is actually a federal mandate, because all of us receive a certain amount of funding from the same source.

There is a mandate that we collaborate and that we work together on issues and on advocacy. So we meet regularly. We are all involved in the projects and programs, done by each other. And it’s a tremendous opportunity for us. It’s a tremendous asset for us because of the, you said they’re engaged primarily in research and, an application of that research, the center for center for disability law is engaged in legal advocacy on behalf of people with disabilities of all types, not just IDD and the DD planning council is engaged in some research, but by and large, it’s more of a grantmaking and contracting body.

Together we compliment each other in immense and really important ways. And when we pull together and when we pull in other advocacy organizations, other service organizations, other advocates, we have an opportunity to reach a much broader audience and to make a much bigger impact.

So it’s a really wonderful complementary relationship that we have. I think it is very much to the benefit of the state of Arizona.


Keith: And I should interject that, the organization that oversees both the USEDs around the country and the LEND programs is called AUCD and that is the ASsociation University Centers of Disability, I believe I am a member in that, it has been a while unfortunately.

So wrapping up, and thank you so much for your time. You’ve worked almost a decade serving and supporting the IDD community, Intellectual Developmental Disabilities, and like you said at the beginning you came into serving this community just because you needed a job. Was it, there must have been a steep learning curve, familiarizing yourself about the communities, the laws, and everything. And now looking back at almost the decade point, not to date you in any way or form, and you mention the surprise of being so involved with this community for such a long time. What about serving the community that is not confined to a few disabilities but that can broaden across several dozen at least, maybe more. What about serving that community and interacting with members of the IDD community motivates you to continue the fight on their behalf and on the behalf of everyone in the disability community at large?


Jon: Well, you know, when I feel as though when we do this work, we don’t spend a great deal of time pondering that question. We do it because we’re sort of driven to do it. Now, the fact that I came into my position with the ARC, to me just further reinforces the notion that I hold that we are led to things in life and, and, you know, different people have different forms of spirituality or faith or whatever you want to call it or not.

But in my case, I happen to believe that it wasn’t by accident that I landed with the ARC, and it’s certainly not by accident that I have stayed in the field that I have felt such commitment and dedication to doing this work. Part of it, I think, is, you know, the sense that justice has not been done for people with disabilities historically.

And I don’t, I want to be really careful because this is not to self-aggrandize. This is not to, you know, to, to place myself on a pedestal or anything like that. It’s just, I have this strong notion that we owe people with disabilities, much more in terms of respect, in terms of opportunity, in terms of justice, then we have, as a society, given them over the years, not to say that there haven’t been tremendous strides made.

In fact, we have heroes that we can point to, of the disability movement, who have changed the world. And I don’t see myself as a hero. I don’t see myself as somebody who changes the world, but if I can change, you know, maybe this corner of something, or if I can work with people to help change something, then maybe that moves the world toward being a little more just, maybe that moves our society toward being a little more just, and a little more inclusive and a little more accepting and embracing and ultimately, perhaps someday we get to the point where we don’t think of us and them. We don’t think of people with disabilities and people without disabilities separately. We think of everybody together. What a beautiful thing that would be. And so I guess if I step back and I think about why I continue to do it, why I feel like it’s worth doing, it’s just that, I mean, We have an obligation, maybe even more so we have an opportunity.

And how fortunate are we to be in this place? You Keith, with your voice, speaking out as a self advocate, as somebody who is really well-informed as somebody who lives and breathes this and is creative about how he speaks out to me and, you know, I don’t know what I bring to it, but have an opportunity.

We are, we are blessed to have this moment to try and make something happen and God willing, you know, we can be part of the instrument of change that brings about, a positive movement, a positive direction in the course of our society. That’s, you know, fingers crossed. Let’s hope it happens.


Keith: Yes yes. Before I let you go. I mentioned that you came in with little knowledge of what you were getting yourself into. How steep was the learning curve of learning about the communities you would be serving and not really interacting with as much as some would like or would expect. But you still need to know about them and what is the best way to serve them, and so again looking back at someone who just came in and found another calling that has become such a passion in both their, pardon that I speak for you, in both their personal and professional life, how was it stepping in to the community for the very first time?


Jon: Well, I’ll tell you, it was about an 89 degree slope, if you want to talk about the learning curve, it was steep. I knew next to nothing about the disability world or about disability issues. I had spoken to an elected official, I think once before a professional level. And I’d never lobbied. I had never really done advocacy. So what I knew was kind of how to manage a nonprofit organization and beyond that, everything really had to be learned.

Now I was fortunate because we had some great folks associated with the ARC when I started, who could teach me and did teach me. And they were very generous with their time and very generous with their expertise and knowledge. So I was, I was blessed. But I’ll tell you, even, you know, as you said, almost a decade down the road, I look around and realize how much I don’t know and how much I still have to learn.

I don’t think you can ever stop in the disability world. You know, things are changing every day, and so there’s something new to learn all the time. I don’t know what it was. I was fortunate. I had great people around me who taught me and that helped, and I latched onto it quickly.

It’s a bad time to say this, but it infected me. This work infected me. So I’ve never doubted my commitment to it since early on in my time at the ARC. So it’s just, again, How blessed do I feel that I am able to feel this incredible sense of dedication, this incredible sense of commitment to this work?

On behalf of, as you’ve mentioned, people that I might never meet and I don’t interact and even with the ARC, because we weren’t a service provider, we were an advocacy organization, I didn’t interact as much as as many service providers do with, with the people they represent, the people they serve. But I had a chance to meet you, and that made a huge impact.

I’ve had a chance to meet a great many other self advocates. You just have to take advantage of what’s put in front of you. As I said earlier, listening to you advocate in congressional offices on particular issues, as somebody, you know, whose life is affected by this on a very personal level and, and who wants to change things, not only for himself, but for everybody else, uh, that, that kind of passion, that kind of willingness to put yourself on the line to speak your experience to people in positions of authority and people in positions of power, people who have the ability to make a decision that affects other people’s lives.

Um, not everybody is willing to do that. I hope we reach a day where, where everybody is, where everybody is willing to speak out the way you speak out, because that is further inspiration. And that is further education for people like me.


Keith: Yeah I mean, the reason I started this podcast to begin with is education. Without doing interviews, this podcast and hopefully someday a video cast does not work, it does not exist, without interviewing other people and hearing about their stories. I mean when I first met you, because of your very pointed advocacy, you had certainly been around the block more than once, strange phrase, I so I had naturally but as this interview has opened my eyes to, wrongly assumed that well this person, this man must have a very storied history with the disability community and being impacted by a personal sense.

But learning that it was the exact opposite, and again not to demean people who get into this work because they have a personal connection in one form or another, but it’s hearing about people like you that are just guided by some other source, and I just wish that I could meet more people like you who do not necessarily have the connection to disability, not that there’s anything wrong to have a connection to disability, but in meeting people like you, and I hope I am not overselling this or giving you ego too much of a boost.

It sort of restores my faith in humanity that there are people like you out there who can give so much of themselves to a community that a few short years ago, they had no idea existed, and to be so ingrained now in said community advocating for people that you may and probably will never meet in your life is, I mean the term inspiring and inspired is sort of a dirty word in the disability community becaue it is so overused and if my purpose in life is to inspire you then what am I doing, but I mean yeah to turn that around and to place it back onto you, it is an inspiration that you can come in and get so deeply invested on behalf of a community with no prior knowledge, I just wish more people would be like you because we need, we certainly need people to become engaged with the disability community, certianly we are noty going to turn anyone away who has a prior connection, but like I said it fills me with a lot of hope to know there are people out there like you who become so passionate about advocacy and it is just amazing the stuff I learned about you.

It makes me respect you even more than I previously did, which to be honest, I didn’t think was possible. Not to beat a dead horse too much, it is gratifying to know that there are people out there who can become invested and find the work rewarding as hard and as grueling as it can be and stick with it like again to use another phrase, ride or die, I mean it is just really eye-opening and I really hope that this interview gives the listeners, particularly those who do not yet have a disability themselves, or to be impacted by disability in their own lives, personally or professionally, I hope that your example will motivate and encourage them to reach out, to support the disability community because we need to work with everyone and we are not going to turn people away, certainly not. The disability community is the only minority, it’s one of the largest in the country, but it is one of the only communities that you or anyone else for that matter can join at any point of their lives whether you like it or not. I have been extremely blessed to know you. I thought I knew you a lot better before I did this interview, but it is just so gratifying to know that there are people out there that can become as invested in this work and making a difference as I can without having the connection that I do and I just wish there were a lot more people out there who were as committed as you Jon. I would like to thank you because this has been such an eye-opening and moving interview and I just can’t thank you enough.


Jon: Well, you are, you are far too kind and you give me far more credit than I deserve.

It’s my privilege to be able to do this work. It’s my privilege to be able to spend time with you on this podcast and you know, I’m hopeful that your listeners will take from this, that you don’t have to come to disability advocacy or the disability field with that personal connection, you can come because you have a heart for it because you, you, you want to make a difference and there is so much opportunity to make a difference in this work.

You personally as a self-advocate, you, as an advocate on behalf of other people, you’ve made impressive things happen. You’re a great example. I hope that I’m a good example for people, but it takes everybody. Let’s all do it together. Let’s make things happen.

And thank you so much for the opportunity to talk with you today. I wish it hadn’t been so many years since we’ve connected, but I certainly hope that it won’t be too many more years before we do it again.


Keith: Certainly not. Take care of yourself. Enjoy the council and enjoy making your mark.


Keith: You have been listening to Disability Empowerment Now. I would like to thank my guest today and you, the listener. More information about the podcast can be found on DisabilityEmpowermentNow.com. The podcast is available wherever you listen to podcasts or on the official website. This episode of Disability Empowerment Now is copyrighted 2022.