Skip to content
My WebMD Sign In, Sign Up

Disabled and Independent: Community TV

  • Richard Cohen:

    Phil Pangrazio is the executive director of the Arizona Bridge to Independent Living.  Phil is a quadriplegic due to a spinal cord injury suffered in an auto accident 30 years ago. He is 49 and is what is known as a high-functioning quad.  I think that means Phil drives and dresses himself and probably does just about everything you and I do performing life’s little tasks.

    Phil, how much do people dealing with disability value independence?

  • Phil Pangrazio:

    Well, a lot obviously.  I think people with disabilities want to do everything they can to be independent as much as possible.  I think, you know, it’s a lot, I think we take a lot of pride.  I think some of it -- some of it’s stubbornness, and you know we’re all different though, but I know myself, personally, I know I want to do as much as I can for myself, be as personally responsible for my own destiny and do as, you know, not be, you know, just want to be, want to be independent.

  • Richard:

    Sure.  Tell me a little bit about the independent living movement.  It’s been around for decades.

  • Phil:

    It has.  The independent living movement was started in the, probably in the late '60s, early '70s with Ed Roberts who is kind of considered by many as the “father” of the independent living movement, and Ed had a significant disability from polio, lived on a respirator for most of his life or actually on an iron lung and actually had to be moved around on a gurney table because of his severe quadriplegia.  But Ed kind of led the charge to integrate colleges and universities so that people with disabilities could actually go to college and be as independent as possible and have places to live like accessible dormitories and make sure the classrooms were accessible for people who used wheelchairs and other mobility devices, but the movement started predominantly, you know, at that time, kind of dovetailing I think what was going on with the Civil Rights movement of the 1960s for the African-Americans and for people.  Certainly women as well even in the '70s with the Women’s Liberation movement but the focus, people with disabilities kind of wanted a piece of that.  It felt, you know, that was an opportunity for us to --

  • Richard:

    Right, but to me disability is a civil rights issue and we have rights that we don’t always enjoy just like everybody else.

  • Phil:

    That is true and it is a civil rights issue and we, I think that’s why we fought so hard to get certain pieces of legislation passed like 504 of the Rehab Act that required, you know, government programs to be accessible to people with disabilities and certainly the Individuals with Disabilities Education Act that, you know, integrated our schools more for people with disabilities and of course the Americans with Disabilities Act that was passed in 1990 kind of was the, you know, the big enchilada so to speak for, you know, making it, you know, giving more civil rights to people with disabilities.

  • Richard:

    It’s not just people in wheelchairs, right?  It’s really a cross-disabilities movement.

  • Phil:

    Correct, and the independent living movement is a cross-disabilities movement.  Centers for independent living that were established originally with funding from the Rehab Act of 1973 and later amended in 1978 to include independent living services, part of that mandate is that centers for independent living serve people with all types of disabilities whether it’s mental health disabilities, whether it’s someone who is blind or deaf, people with physical disabilities like myself who are quadriplegic.  Yeah, it’s an all – it’s, you know, where the independent living movement really is the only cross-disability kind of, you know, we’re the only cross-disability organization that really exists out there to serve people with disabilities.  There’s a lot of organizations; many of them are a lot of organizations that serve people with disabilities, but many of them are specific to certain disabilities whether it’s the spinal cord injury associations or the MS Society or the various deaf organizations, blind organizations that are again very specific in what they do.  The Independent Living Movement – we kind of try to bring everybody under one tent and it’s not always happy and it doesn’t always work real well.  But the goal is to kind of get us all thinking that we’re all in this together and if we kind of unite, we’re a lot stronger if we work together on issues.

  • Richard:

    Isn’t one of your highest hurdles, if you will, issues that you have to deal with public attitudes and paternalism toward people with disabilities?

  • Phil:

    It is, and it’s something that really never completely – it’s a work in progress.  It’s taken a long time.  I think we have changed attitudes a great deal.  I think, and in fact we when we talked about attitudinal barriers we talk about that it’s not just the attitudes of the mainstream public or people that don’t have disabilities, but it’s also the attitudes of ourselves and that people with disabilities have to overcome their own attitudinal barriers and that, you know, we need to, we need to do as much as we can for ourselves, and that means, you know, trying to become independent through, hopefully through work and earning income and not having to be dependent upon government programs and entitlement programs.  And you know where possible I think people with disabilities have an obligation to, again, to strive toward those kind of goals and objectives, but you know we recognize not everybody is going to be employable, but many of us can be and many of us are, and again we try to promote that as much as possible.  But the attitudes, the attitudinal barriers are huge, and they create a lot of discrimination and oppression of people with disabilities because, you know, the mainstream society still in many ways excludes us.

  • Richard:

    Well, I think they think we’re half people.

  • Phil:

    They do.

  • Richard:

    Half people – we’re not on the same level they’re on.

  • Phil:

    They, they do and that’s sort of the pity.  That that’s the pity that sort of mentality that exists out there.

  • Richard:

    Well, they tell me that we have used the term “pity myth.”  Tell me about that.

  • Phil:

    Well, oh, we hate to – I don’t want to throw this out there but I will.  I think it’s sort of the Jerry Lewis telethon mentality that, you know, does very good at, you know, raising money.  You know, Jerry obviously has been very passionate about helping, you know, children with significant disabilities, but also he’s done a lot to perpetuate that stereotype and that attitude that people with disabilities are there to be, you know, their poor pitiful situation, you know.  And then the more pitiful, Ed Roberts used to say, you know, the more pitiful you look the more people feel guilty to give and that’s kind of been the strategy by, you know, the telethon.  And again, I know they try to cutesy it up and make people, you know, feel good about the children that are paraded in front of the camera and put on the posters or made the poster children, but you know it just unfortunately goes to perpetuate the stereotypes.

  • Richard:

    Right, and coming back to your previous point, I think, I think it has an impact on how many of us see ourselves.  That we sort of buy into that ourselves, which is not good.

  • Phil:

    It isn’t, and we, I think a lot of people do buy into it and it’s only through, you know, getting exposure to new ideas and different ways of thinking that, you know, people with disabilities can kind of break out of those limiting attitudinal barriers and constraining barriers.  Yeah, I think, and that’s what the Independent Living Movement is all about, and if we peer, the peer support model, you know, we try to preach to folks with disabilities that, you know, that we know, we’ve lived it.  And I, like you mentioned, I’ve had a disability for 30 years.  I’ve been there; I’ve done it; I’ve learned what it takes to adjust and adapt to my disability.  I can, people like myself who have experienced it and can share with others that are going through it for the first time or at the early stage or onset of a disability, and we really try to promote that, you know, that peer support model is probably the best way for people with disabilities to get there and begin moving in the right direction.

  • Richard:

    Right.  Well I, I subscribe to the view that people out there just talking about the public, just doesn’t get it.  You told me a story about the Arizona Disability Film Festival, which I think is a very telling situation.  Tell me the story again.

  • Phil:

    Well, we had a Disability Film Festival in town just recently that was sponsored by the local university, and you know they never – I didn’t even know that this was happening until a couple of days before the festival occurred.  I got a call – someone mentioned to me are you going to this, and I was like going to what?  I don’t even know what I’m going to.  But then I did go down and I sat in on a panel discussion that was, there were seven directors of multiple films that were shown over the three day weekend – Friday, Saturday and Sunday – and the directors of the film were up on stage and they were talking about their films.  Or really what they were talking about was disability and they were talking about what, they were giving their feelings about you know what it was like to shoot these films about people with disabilities and ...

  • Richard:

    All right, but none of them was disabled.

  • Phil:

    None of them were disabled, no.  No, and it was really kind of shocking to me and the other folks that I was with that are also with people that are living with disabilities, and that a lot of what was being said you know again was – there’s an old saying in the disability movement, “Nothing about us without us.”  And we find it sort of appalling when people that don’t have disabilities begin, you know, trying to project what they think it must be like to have a disability.  I mean it’s kind of like appalling that you know they should, it would have been perfectly OK for them to talk about the films and talking about their film-making experience, but when they started projecting what we like to have a disability, how the pain and the agony and how horrible it must be and you know.  That and of course the language that was being used by these directors.  One gentleman used the handicap word you know about 100 times and you know that, that ...

  • Richard:

    Which is not acceptable.

  • Phil:

    It is not acceptable, and we really promote people-first language and the disability rights movement, meaning that you know you should always view the person first.  It’s a person with a disability; they’re a person first.  Their disability is really secondary to you to their medical condition, and again they’re just a person.  And we can speak for ourselves, we can, you know, we’re all very capable of that for the most part.

  • Richard:

    Do these internal attitudes extend of the medical community?

  • Phil:

    Yeah, they do in a lot of ways, and I’m always hesitant to be too critical.  I mean, we need the medical community.  They do great work, and when people need a doctor, you know, or a nurse or a social worker or a psychologist or a psychiatrist or a vocational rehabilitation counselor or occupational therapist or a physical therapist – you know, and that’s all the medical model and those are the folks that you know we rely upon, especially in the early stages of dealing with a disability.  Those are the integral, integral people and players to kind of help folks with disabilities, but you know at some point again there is a paternalistic process that takes place, I guess.

  • Richard:

    Do doctors talk down to you?

  • Phil:

    You know, every doctor’s different.  To some extent that can happen.  I think it’s, I think the problem is and the independent living movement, the independent living philosophy talks about the medical model vs. the independent living model and the medical model has a tendency to look at the person with the disability as being broken, and if we do something to them, if we tweak them here and poke the there and we prod here, you know we can make them better and we can fix them.  And you know, with the independent living philosophy says that you know it’s really not the individual with the disability that’s broken; what’s really broken is society and the environment in society.  If we fix the environment, you know, people with disabilities can learn to adjust and adapt and live in integrated settings and live in the community.  You know if we make public transportation systems accessible, if curb cuts are put in, if restrooms are made accessible for people with disabilities – if TTY telephone relay systems for people who are deaf, you know, signals on cross walks for people who are blind, the audible signals.  You know there are slews and slews of environmental fixes that have come about over the past 30 years that make it possible for people with disabilities to live in the community, that’s what we say is broken and what the paternalistic world, you know, of the medical model sort of sometimes has a tendency too much to focus on is that, you know, the poor person with the disability is really broken and they’re the ones that really needs working on and, you know, we don’t see it that way.

  • Richard:

    Sure.  Let’s, let’s move on to some of the very real practical issues that you get very involved with.  One is housing, one is transportation, one is employment.  Let’s take those one at a time and start with housing.  What are the big issues with housing?

  • Phil:

    Well, affordability is No. 1, and then accessibility, you know.  And they kind of go hand in hand, and there just is not enough affordable, accessible housing that is located in, you know, located on public transportation systems because that transportation’s kind of the second piece of the puzzle.  Especially for being employed – if you can’t get to work you’re not going to be able to work and hold down a job.  But those things, you know, housing – that’s kind of the No .1 call we get when someone has a disability.  Especially if they don’t have family supports to rely upon.  Oftentimes, you know, when someone has a disability, you know, Ed Roberts used to say, disability is an equal opportunity society.  Anybody, anywhere can join at any time and ...

  • Richard:

    Uh hmm.

  • Phil:

    ... and it can happen at any moment.  And if you find yourself like I did 30 years ago in a rehab unit, you know, paralyzed from the neck down and, you know, you, you’re not, you’re going to have a hard time finding a place to live once you get out of that hospital.

  • Richard:

    So, talk about transportation.

  • Phil:

    You know, we’ve made a lot of strides in transportation.  The, you know, our public buses, you know, are now accessible, and hopefully they work and bus drivers don’t pass you up while you’re standing on the street corner because they don’t know how to operate the lift system.  But I hear, I always hear horror stories about that, but for the most part our public transportation system is vastly improved and much, you know, has become very accessible.  Airline transportation still is a challenge for people with disabilities that you still have to be able, to be, you know, be hauled inside the plane and lifted and transported into a seat and you can’t bring a power wheelchair on a plane and just lockdown the power wheelchair, and, you know, be able to stay in your own wheelchair.  So air travel is still a challenge, and some of the train travel can still be a challenge, but there has been improvements on it.

  • Richard:

    Let’s move on to employment.  You shared a very startling statistic with me the other day.  Employment is a very real problem, isn’t it?

  • Phil:

    Yeah, it’s estimated that upwards of 70%, 75% of people with disabilities are unemployed and/or underemployed. It’s, you know, employment is the only way, you know, to become self-sufficient, and you economically, and people with disabilities, you know, it’s a getting access to the work force is really, you know, it’s difficult.  And those doors are not always open.  Living on Social Security disability cash benefits is basically living in poverty.  The average Social Security check is somewhere between, you know $700, $800 a month, and nobody can live on that.  I think that’s very obvious that people can’t live on that, and so the only, you know, the really only avenue to employment or the avenue to self-sufficiency is through employment, and we really, you know, the Centers for Independent Living works very hard to promote employment and try to provide employment services where possible even.

  • Richard:

    And also, if you don’t have a job or a decent paying job, you’re not going to find affordable housing.

  • Phil:

    Correct.

  • Richard:

    So, I mean they all relate to each other.

  • Phil:

    That’s the catch-22 because, you know, when fair housing laws went into effect, multi-housing builders were required to build their buildings and their units with a certain percentage of those units had to be accessible.  Well I guarantee you, if you’re a person with a disability and you go down to your local apartment complex down the street, you’ll be lucky if the apartment owner can even tell you how many units he has that are accessible let alone he will tell you that he’s got one available for you to live in.  It’s, it’s been a real problem.

  • Richard:

    You know, people with disabilities who don’t have jobs or well-paying jobs and can’t find housing must have real psychological, a real psychological reaction and very bad self-image problems.

  • Phil:

    Oh yeah, it is a problem and self-esteem.  Self-esteem and confidence is a huge problem for people with disabilities.  You know, for obvious reasons because if you, if you have been discriminated against and you face the oppression that, you know, people with disabilities face every day, it is harder to, you know, maintain the kind of self-esteem and self-confidence that people without disabilities, you know, would maybe take for granted to some extent.

  • Richard:

    Do you -- a startling number of people with disabilities are in nursing homes, aren’t they?

  • Phil:

    They are, and they, you know, that’s a big problem, and we’ve been fighting that for years, trying to promote more home- and community-based services for people with disabilities, and we’ve made great strides and having access to more home and community-based living, but many states still have a real problem with what is called the institutional bias where the vast majority of long-term care funding -- Medicaid, Medicaid long-term funding for low income people -- is directed towards nursing homes or other institutional living environments and that, you know, that’s been a real struggle.  We’ve, you know, we’ve been really working hard to try to get some of that institutional bias changed, and slowly, you know, strides have been made, but there’s still a lot of states that, you know, invest a lot of money into the institutions, and communities have, you know, are dependent.  You know, you’ve got communities that are dependent on jobs at the local state institution, and unfortunately that perpetuates those institutions staying open.

  • Richard:

    But don’t you, don’t we save the government money by moving people into an independent living situation?

  • Phil:

    We, yes.  There’s been a lot of research in this area about what the cost of home- and community-based services are vs. the cost of institutionalized, you know, skilled nursing facilities and the cost to live in a community is a lot, is less than living in skilled nursing facilities.  And again, you know, there are certainly people who need access to skilled nursing facilities and nobody would, nobody’s going to argue with that.  I certainly will not.  But there are many people that don’t belong in institutions that don’t need to be in institutions that can live in a community and should be allowed to.  Unfortunately they don’t have access to that opportunity.

  • Richard:

    But people should have the right to live where they want and how they want, it seems to me.

  • Phil:

    I would hope so.  I mean that’s, we certainly believe that and we fight for that every day.  It’s not always what, you know, it’s a struggle, and everyone ... it seems to come down to money so often, and I think we’ll, you know, even in today’s economic climate, I think there’s even this is what makes it even more of a challenge because there’s even now more of a pushback.  That now because of our economy that, you know, people with disabilities are going to have to fight even harder to keep what we’ve got and let alone get a little more.  It’s going to be a real tough climate over the next few years.

  • Richard:

    Well, it seems like it’s a journey without end, and I admire people like you who, who stay on the front lines.  Phil Pangrazio, thank you very much for being with us and we wish you the best.

  • Phil:

    Thank you.

WebMD "A Patient Voice" Community