Guest: Mike Rogers
Topic: Self-Advocacy Association of New York State
Published: April 1, 2021
Host: Welcome to Independent Perspective In-Depth, a program presented in the public interest by the Western New York Independent Living (WNYIL) family of agencies, courtesy of the Niagara Frontier Radio Reading Service (NFRRS). Using this long format, we’ll be exploring the broader issues affecting the community of people with disabilities in discussions with knowledgeable individuals from a variety of organizations and backgrounds. We are delighted to have as our guest for today Mike Rogers, Western Regional Organizer for Buffalo of the Self-Advocacy Association of New York State (SANYS). We are your hosts, Jillian Moss Smith and Ernest Churchwell, welcome to the program, Mike.
Guest: Hi everyone, how are you.
Guest: Great to be here.
Host: And we're pleased to have you. The name Self-Advocacy Association seems to suggest that it is composed of individuals who themselves have disabilities. Is it so and may we ask you about yours?
Guest: Sure, yes, the Self-Advocacy Association was was founded by people with developmental disabilities, its founder, started the organization with supporters from the Willowbrook situation back in the day, and our board is made up of all people with developmental disabilities. And we have employees with disabilities, along with supporters. And as far as my disability goes, I have spastic quadriplegic cerebral palsy, which basically means, my muscles get tight, and the CP affects all my limbs in some way, some more than others.
Host: Thank you for sharing that. Unlike many of your peers, your parents actually enabled you to avoid spending your early years as a virtual prisoner in a remote institution such as the West Seneca Developmental Center, later called the Developmental Disability Service Office or DDSO. Instead you attended public school in Cheektowaga and went to Canisius College. Are you pleased that the DDSO is no longer residential facility?
Guest: Yes, I am. You know, there's always debate because people say that there were very good workers with good intentions and they did some, many good things as direct support workers, and I don't disagree with that. But people should not be in institutional settings, they should be in settings that are, as we say least restrictive, but I like to use the idea of most inclusive, as we can be.
Host: All right, Mike, you mentioned that SANYS was founded by individuals with developmental disabilities (DD), and for the benefit of our listeners, we'd like to assure them that DD is not as some of assumed a euphemism for intellectual disabilities. For the benefit we'll mention that DDs include almost any central nervous system disorder occurring before age 22 and thus affecting development including cerebral palsy, autism spectrum disorder, epilepsy, spina bifida, traumatic and acquired brain injuries, learning disabilities such as dyslexia, attention deficit hyperactivity disorder, hearing loss, fetal alcohol syndrome, fragile X syndrome, intellectual disorders, and many more. Whew, take it over Jillian.
Guest: Well, I just wanted to say if I could that there's different thoughts with the definition and what it means. Like in in some areas, people will include intellectual disability, along with DD where some people will separate them. So, there's different schools of thought there. But it all comes out to be what we need it to be.
Host: So, you have been involved in disability advocacy for about 15 or so years mostly at SANYS; what is your role there?
Guest: I am Regional Organizer so what I do, my primary role is to connect people together through self-advocacy groups, and they are groups that are made up of people with disabilities, with DD that get together and they address what's important in their lives. They work on what's important to them and their members if they can be social, as well but many people get together and work on what's important in their lives. And, for example, I share my own self advocacy group and we focus, many times on political issues in the political realm. That’s just an example. It depends on what the group wants to focus on, as well as I attend many and are part of many meetings and community justice groups where I'm affiliated with voice Buffalo Accessibility Task Force, affiliated with voice Buffalo. I don't want to give you a name of the task force because we're changing that. But we have done a lot of work on getting transportation equity for people with disabilities as well as other things. So that's just kind of a background if you want to know more, just ask me.
Host: Although just based on what you said, our listeners probably have a fairly good idea, but each person's story is different. How did you become involved in the self-advocacy civil rights movement?
Guest: Well, it was interesting because when I was younger, I didn't believe in that stuff. I was like, people with disabilities, they don't get it, they don't push enough, and people not labeled disabled they're, I used other terms back then, they really don't get us, so I was kind of in the middle. And then I heard that there was an AmeriCorps program where they went out and spoke to groups, and I'm like, I'm not going to speak in public. I'm not doing that. So a friend of mine said, but there's a little stipend involved and I was unemployed at that time so I'm like, where do I sign up, and then I got involved, and now I can't see myself being anything other than a professional self-advocate in some way. I went from not believing in anything like that, that rights were, that was ridiculous, people don't think that way, to hey, maybe there's something to this.
Host: That's quite the story. Thank you for sharing.
Guest: And it's my professional world now, I would never have thought I would have been here in my life at all, I would have laughed at you if you said something like that.
Host: Well we’re happy you made it here.
Guest: Well thank you.
Host: SANYS has two Western New York State regions, one for the Finger Lakes and yours in the greater Buffalo area. What counties are included in this western region?
Guest: Well we go all the way down to, I believe down into Wyoming, I'm always screwing that up, but I believe. And then from the Wyoming area, it's in the Wyoming area, so everything up to Wyoming is Western Buffalo. And then Rochester takes care of what's after that. That's how I remember it is very difficult, this is one of the difficult things that I was talking about.
Host: Well, let's see, If I could sum up, I think you probably are referring to Erie, Niagara, Cattaraugus, Chautauqua, Genesee, Orleans, and Wyoming counties, right?
Guest: Yes, it depends on where the group is. We kind of end at Genesee, and then that goes on to the Finger Lakes area.
Host: All right, well, a logical question for our listeners are what are some of the initiatives in which SANYS both statewide and in your western region is currently involved?
Guest: Well, we definitely are involved in, if you want to think currently, we definitely are making sure that people know about the vaccine and vaccine rollout and how to be safe in the community during COVID. We are definitely making sure that people are aware of the wage disparity for direct support professionals. We also are making transportation a priority, housing, those areas are the things that we want people to, we motivate people to organize around because those are the big areas that still affect people with disabilities and DD alike.
Host: That makes a lot of sense. So, the coming of the COVID-19 pandemic has caused many activities to be postponed and cancelled altogether. How have self-advocacy efforts been affected?
Guest: Well honestly, through the use of virtual conferencing as I call it, we have been very, very effective. I mean, yes, it has going out to visit groups and seeing what they're doing and then actually getting together, have been difficult, it's been a difficult transition for some, because they may not have access to the internet, the correct way, or technology. But I do have to say that one of the silver linings of this is getting internet knowledge to people, and also showing the disparate in access to the internet between people with disabilities and DD, versus the general community. But it's been great, we've been able to get many people online, us along with other organizations across the state have really been able to connect people on a daily basis. We have meetings up until the evening every day that people can get on. People are getting more invigorated about getting connected to our meetings but people across the country and across the world, they've come on and connected in many different ways. So, I think it's actually helped the self-advocacy movement in many ways to bond together and realize what we're capable of. When we can actually find an easy way to communicate.
Host: Yes, it seems like virtual events and virtual meetings and things like that have helped us kind of grab onto those people that wouldn't be able to make it to a physical meeting or have the time to make it to a physical meeting with transportation and things like that. So I mean even on our end here at WNYIL we've seen that a lot of people are really enjoying, I mean as much as we're all tired of virtual and we just want to see people in person, really enjoying the fact that people that would never be able to come out to our meetings and our events have been able to do that from the comfort of their own home and we're getting a much better audience.
Guest: I have been advocating for this for decades. Not decades, that's being a little bit much but for a long time. So now the DD world is really looking at internet equity, and getting people connected, so I couldn't be happier about that I just wish it didn't take a pandemic to do, I'm not happy about that.
Host: Yes, of course. Well thank you. For the benefit of listeners that have just joined our program you're listening to Independent Perspective In-Depth, a program presented in the public interest by WNYIL. Our guest today is Mike Rogers, Western Regional Organizer for Buffalo of the SANYS. Now we'll continue exploring the exciting work of your organization.
Guest: Thank you.
Host: So although laws such as the Rehabilitation Act of 1973 and the Americans with Disabilities Act of 1990 have greatly strengthen the abilities of citizens with disabilities to oppose discrimination and achieve greater access, good disability advocates know that there are entities and individuals who feel these requirements are inconvenient, costly or unnecessary and seek legal loopholes or new ways to change the laws to reduce their protections. Plus, legal changes need to be made to deal with new infringements brought about by advances in technology, or more polarized public attitudes. What do you see on the horizon as far as areas that will need strong advocacy efforts to stay ahead of these challenges? And for instance, access to affordable, accessible housing, transportation that is useful for those with various disabilities?
Guest: Well, I think that this is going to be an ongoing battle as far as equity is concerned. Because when you talk about, like you mentioned, housing, I know that we give as an organization and as personal advocates, keep pushing for affordable accessible housing. But part of that is making the developers and the general public aware that it's needed, because I know personally, as a worker in the community, because I've had other jobs besides this, a lot of times people get the impression that oh, well everything's taken care of for you. Customers would say that to me in public. It would be well why do you need any of this, because doesn't the state take care of people in your situation. And I think we need to constantly push them make the public aware that people need affordable accessible housing, that is not there, and we need to keep letting our representatives know that without this, especially with the advent of self-directed services, self-directed ways of thinking about living, Consumer Directed aid service that more and more people are going to want to take advantage of living more interdependently, and that there's going to be a need for that. And there's also going to be more people wanting you get education and higher education, especially now that people are thinking about going beyond the IEP or, IEP mentality that these things are going to have to become mainstream. And especially with education, even though we've had growth in that area that, transitional services and things of that nature are much, much, much needed. You know those are just things that come to my mind when I think about equity, as well as employment I could go on and on and on about all of these areas.
Host: Right. And before we move on, Mike, you mentioned IEP, could you just tell our listeners what that stands for?
Guest: I believe it's Individualized Education Plan. That's what was predominant in the past, but the problem was that if you had an IEP diploma, it didn't carry as much weight as your regular high school diploma or region's diploma. But I think more people now being younger and even more stronger advocates as the generation goes on, and they're taking a look and saying, I want more after high school, I want to go into higher education, I want a job, and I see a lot of that in young people that I've met. So, the expectation is higher than in past generations as it should be that's called progression, right.
Host: All right, although you've alluded to this a couple of times now, I should remind our listeners that even in pre-pandemic times unemployment levels for those with disabilities was significantly higher than for the non-disabled. Although some people are trumpeting the fact that they believe the economy is coming back, a national public radio show on business keeps saying improvements in the stock market in Wall Street do not necessarily mean that the economy is healing. The downturn caused by the COVID-19 restrictions has disproportionately affected workers with disabilities. Is this an area to which you will be turning your efforts?
Guest: I think that this is an area that we've always been concerned about because, again, as a person with a DD, when you try to go into the workforce, much of our work environment doesn't understand about needs versus productivity, and what could be possible. So I think, I'm not going to say we're turning our efforts to that, our efforts are focused on that but I think people with disabilities have to even narrow their focus even more now that we're seeing the disproportionate unemployment for people with disabilities during the pandemic. There needs to be much, much more work done on equity of employment, what a person with a disability can mean to an employer, what they can bring outside of the numbers and just income levels or what the company can earn, we need to see past just that and see what other things, they need to see what other things we bring to the table, not just the struggles we give them to have accessibility and employment.
Host: Right. So, at SANYS you have a good vantage point to view the range of efforts being made for your consumers. Does Western New York have a thriving self-advocacy community, or can your organization use more advocates?
Guest: Well, I can say that our organization can use more advocates anytime. We need younger people to step up, we need people that are seasoned already to always be stepping up. We do have a very thriving self-advocate community but there's always more work to be done. And it's like the sun shining, we never want it to stop because then stuff stopping growing, right. So, we always need new people, and we want young people to step up and we want support in helping young people to step up from family members, educators, they need to step up, because us old folks are going to be, and I’m not that old, but us older folks, when we decide that our time has come to an end, the movement must continue. The movement must continue. We must always remember where we came from, and that that movement must continue. It's not just about a business it's about a movement, and that's a worldwide movement.
Host: Right. I'm sure that what you said has inspired a number of people, that leads to the obvious question, how can people with or without disabilities get involved in these advocacy efforts?
Guest: While right now I would, and I'm saying currently, as I would, they can always contact me and I'm going to give out my email address, it’s email@example.com, you can also go to do www. sanys.org and look at what we have to offer. I would normally under regular circumstances, I don’t want to say normal because nothing is normal, but under ordinary circumstances, I would mention events and different things like that. But we do have regular zoom meetings every week. Not only us but other organizations around the state so they can always get a hold of me to get that information, that should also be on our website, the list of meetings and everything with that. So, I would say get involved that way because COVID has changed things. So, if they can get on zoom or whatever other platform a meeting is on, I would encourage them to do that because that's convenient in many ways at the moment so I would encourage that. As well as get involved in something that might be going on in your area that you hear about, whether it be an event or something like that, or even if you want me as a fellow person with a DD to help you start a self-advocacy group, because that's part of what I do too is help start groups, as well as go to all other kinds of meetings. So, definitely you can get a hold of me that way. And I encourage you to just let me know where you heard about me. Don't just don't say this is who I am because it will help me know where you're from. So, that's what I would suggest.
Host: Perfect and just again for our listeners can you tell us the phone number and email that they can contact if they have questions for you?
Guest: Sure. The phone number is 716-336-6965. So that's how they can get a hold of me again that's firstname.lastname@example.org, there's no D in that. So, remember that if you put the D, you're not going to get a hold of me and that rhymes.
Host: Well, we're running low on time, however, and you've already told people how they can contact you. Quickly, are there any other major aspects of SANYS that you'd like to bring up?
Guest: Well, I just want to say that what SANYS has brought to me is community, and it has brought a sense of purpose. It has showed me that the way isn't as dark as you might think it is. And I think that we support each other in our organization, as do many of our disability rights-based organizations, we support each other, that there's light at the end of the tunnel. When you have issues, there are solutions, or when you become a part of a community, when you become a part of an advocacy group or a self-advocacy group, it opens opportunities for you. So, I would recommend become a self-advocate if you're a person with a DD. Become what you can be. It sounds almost like the army right but, really, a lot of people kind of lose focus when they get out of school, what am I going to do. Who am I going to be, who am I, well this is can be a part of who you are, so that's what I would suggest.
Host: All right, Mike, this has been very enlightening for us and our audience, we thank you so much for coming on.
Guest: Not a problem, it has been my pleasure.
Host: You've been listening to Independent Perspective In-Depth, a program presented in the public interest by the WNYIL family of agencies, courtesy of the NFRRS. Our guest has been Mike Rogers, Western Regional Organizer for Buffalo of SANYS State.
This program features the song A Little Ditty on the Dance Floor by Jay Lang available under a Creative Commons Attribution noncommercial license.
We've been your hosts Jillian Moss Smith and Ernest Churchwell. If you wish to hear this program again, a couple days after the on air broadcast, you can find a podcast on the NFRRS web page, nfradioreading.org on the Programming tab under Bonus Programs and also on www.wnyil.org under Public Relations / Podcasts. Have a good week and be safe.