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Mark – What kind of work do you do?

Mark – What kind of work do you do?

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I’m the Director of Advocacy here at Shepherd Center; this October will be my 30th anniversary. Some people—I describe it as stirring, connecting from public policy to public protest. I got recruited by the rehab that I was rehabbed in to come ba... Show More

I’m the Director of Advocacy here at Shepherd Center; this October will be my 30th anniversary. Some people—I describe it as stirring, connecting from public policy to public protest. I got recruited by the rehab that I was rehabbed in to come back and be a counselor for newly injured, do group stuff, sexuality stuff, you know the gamma counseling. And I told the administrator then that I’d be happy to do that for a year, but I’d like to sit down with him at the end of that year and talk to him. And what I began to realize was I can be the greatest counselor I was, but most of the problems were externally. It was building codes, it was public policy, it was lack of support systems. You know, back then there wasn’t any such thing as a van-only parking place, right, there wasn’t any such thing as a ramp or a lift on a bus, meaning a public bus. There wasn’t anything like beach matting over the soft sand. So, after a year, he brought me into his office as we agreed, and we had a conversation. He said, “well, what are you proposing?” And I said, “how about if I halftime counseling to pay for my job because they need to generate revenue, and halftime community education.” And so, I got involved at that time in setting up an independent learning center. Setting up not just support groups, but support groups that did advocacy. Back then it was the National Paraplegia Foundation, now it’s National Spinal Cord Injury Association, which is part of United Spinal or whatever. But it was a support group initially, and we had the three Cs: care, curing, coping. And so, we focused on the coping. And that meant everything from trying to make things more accessible physically, trying to create more support systems, trying to change public attitudes. Back then it was alright to call me “confined to a chair,” back then it was alright to call me “handicapped.” And what I began to realize was “I don’t want to be confined, my chair is a means of mobility.” I’m not, am I disabled? Sure. Are there things I can’t do? Sure, but that doesn’t make me less than something. And so, advocacy some was back then claiming your identity, you know being involved, and don’t wait for people to change things, you are the expert, you have to be involved in changing things. And sometimes that means you get into people’s face. So, I was involved in starting a group called “Adapt” back in ’83, and it took us seven years to finally get, as part of Americans with Disabilities Act, to get the ADA passed where it would say every new bus bought in the country will be accessible to everybody. But that was a seven-year campaign that involved a whole lot of things including public protests. So, I’ve blocked buses, I’ve chained myself to things, I’ve done sit-ins, I’ve spent three nights in a Phoenix jail. It still makes me nervous every time I protest now. I mean there is a whole lot of protest going on in the country as me and you are having this interview, related to cuts and caps to Medicaid, a very important funding stream for home community-based services. And so, you know, we could sit back as people who are different, and say “you know what is best for us.” And we can say “I know what’s best for me and I need to be involved.” When people ask me about advocacy, I say “have you ever taken anything back?” Say you went to a local, like a Target or something, and you weren’t pleased with the product you brought. And so, you had to take it back to the customer service, “hey, I’m returning this because it’s not what I thought it was or doesn’t work right.” Well as I say, “that’s a form of advocacy, now you just need to make it more personal.” And it’s real hard, I mean back to the identity issues, it’s real hard for people I think, well, people are reluctant I think to do much advocacy about themselves because you’re not comfortable with themselves yet. And when you do advocacy, you bring a lot of attention to yourself, and if you’re not comfortable with yourself yet you tend to resist advocacy.

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Mark – What kind of work do you do?

Mark

Injured in 1981 at age 19, quadriplegic
More Videos by Mark
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I’m the Director of Advocacy here at Shepherd Center; this October will be my 30th anniversary. Some people—I describe it as stirring, connecting from public policy to public protest. I got recruited by the rehab that I was rehabbed in to come back and be a counselor for newly injured, do group stuff, sexuality stuff, you know the gamma counseling. And I told the administrator then that I’d be happy to do that for a year, but I’d like to sit down with him at the end of that year and talk to him. And what I began to realize was I can be the greatest counselor I was, but most of the problems were externally. It was building codes, it was public policy, it was lack of support systems. You know, back then there wasn’t any such thing as a van-only parking place, right, there wasn’t any such thing as a ramp or a lift on a bus, meaning a public bus. There wasn’t anything like beach matting over the soft sand. So, after a year, he brought me into his office as we agreed, and we had a conversation. He said, “well, what are you proposing?” And I said, “how about if I halftime counseling to pay for my job because they need to generate revenue, and halftime community education.” And so, I got involved at that time in setting up an independent learning center. Setting up not just support groups, but support groups that did advocacy. Back then it was the National Paraplegia Foundation, now it’s National Spinal Cord Injury Association, which is part of United Spinal or whatever. But it was a support group initially, and we had the three Cs: care, curing, coping. And so, we focused on the coping. And that meant everything from trying to make things more accessible physically, trying to create more support systems, trying to change public attitudes. Back then it was alright to call me “confined to a chair,” back then it was alright to call me “handicapped.” And what I began to realize was “I don’t want to be confined, my chair is a means of mobility.” I’m not, am I disabled? Sure. Are there things I can’t do? Sure, but that doesn’t make me less than something. And so, advocacy some was back then claiming your identity, you know being involved, and don’t wait for people to change things, you are the expert, you have to be involved in changing things. And sometimes that means you get into people’s face. So, I was involved in starting a group called “Adapt” back in ’83, and it took us seven years to finally get, as part of Americans with Disabilities Act, to get the ADA passed where it would say every new bus bought in the country will be accessible to everybody. But that was a seven-year campaign that involved a whole lot of things including public protests. So, I’ve blocked buses, I’ve chained myself to things, I’ve done sit-ins, I’ve spent three nights in a Phoenix jail. It still makes me nervous every time I protest now. I mean there is a whole lot of protest going on in the country as me and you are having this interview, related to cuts and caps to Medicaid, a very important funding stream for home community-based services. And so, you know, we could sit back as people who are different, and say “you know what is best for us.” And we can say “I know what’s best for me and I need to be involved.” When people ask me about advocacy, I say “have you ever taken anything back?” Say you went to a local, like a Target or something, and you weren’t pleased with the product you brought. And so, you had to take it back to the customer service, “hey, I’m returning this because it’s not what I thought it was or doesn’t work right.” Well as I say, “that’s a form of advocacy, now you just need to make it more personal.” And it’s real hard, I mean back to the identity issues, it’s real hard for people I think, well, people are reluctant I think to do much advocacy about themselves because you’re not comfortable with themselves yet. And when you do advocacy, you bring a lot of attention to yourself, and if you’re not comfortable with yourself yet you tend to resist advocacy.

Mark – What kind of work do you do?
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