Focus 580; Disability Rights

In this hour of focus we'll be talking with them. Disability rights activist Laura Hershey. She is an advocate a writer a poet. She works as a consultant to organizations who are interested in improving their efforts to serve people with disabilities and to increase accessibility to implement the Americans With Disabilities Act. She has many experience experience both as an activist as a consultant and a journalist at the moment. She is advocacy editor of spinal wire which is a website that has news and features in articles dealing with various issues various disability issues also it's a place that people can find products to assist in daily living. She's been involved in many different organizations. Just to mention one she was for a time director of the Denver commission for people with disabilities and also worked as an accessible housing specialist with the Denver commission for people with disabilities. She's received a lot of recognition for her work including in 1909 the

President's Award from the president's committee on employment of people with disabilities. Currently she's been in some time on the UVA campus as guest in residence at Allan Hall as part of the unit 1 program. And she's been good enough to make some time and talk with us here this morning she's joining us by telephone from Allan Hall as we talk with Laura Hershey. You should feel free to be part of the conversation anyone who's listening is welcome. If you'd like to call the number here in Champaign Urbana 3 3 3 9 4 5 5. We do also have a toll free line that means if it would be a long distance call for you. Use that number. We'll pay for the call 800 to 2 2 9 4 5 5. Another way to think about it you match the letters and the numbers on the phone you get W I L L So three three three W I L L and toll free 800 to 2 to WRAL. Ms Hershey Hello. Well thanks for talking with us. Thank you for having me. I thought maybe we might talk a little bit

about the Americans With Disabilities Act just to start. OK well thank you for that correct. You know it's no good for me since I am no longer at the address of the editor with the freelance again since I don't live on it will sit still. Still I think probably that's a good place if people are interested in exploring disability issues is probably a better stunt. Yep that's because of the product a little bit of. OK very good well. Last year a lot of folks marked that the 10 year anniversary of the day and this was the it came about during the first Bush administration. I think some people felt that it maybe was one of the most important things that happened during that time. Nell ten years on what

what can you say about the Americans With Disabilities Act. I think the Americans With Disabilities Act has. Given up for that for its important tools that we as a community can use that are used in is not fulfilled every province or hope that. The disability community had for it. We still have significant problems economic problems. The unemployment rate in the disability community. Has not changed very much since. See it is still. Somewhere around 70 percent which is quite high for any. It's much higher than any other group of people in the US. In some areas it is. It is not fulfilled for half of it there. The dreams and hopes that people had. However in other areas it has made

a really big difference in terms of public accommodation. Restaurants movie theaters stores those kinds of things. It's given the disability community a tool or you know it's a weapon to use against their ignorance and discrimination that we encounter it you know in our everyday lives. The media has also used in a very creative metaphor and ways I think in terms of. For example there was the almost dead incision. By the U.S. Supreme Court two years ago. Which was a case that. Originated. In. Georgia. Didn't even try to disable it when they were institutionalized in order to receive support

services that they require. Because of the disability and I wanted to receive those same kinds of support services in their own home so that they can remain part of the community. And didn't try forcing me to go into the station to get the services they need. In effect there. There are 88 18 rights were being violated because they were being forced into a segregated rather than an integrated set and mediating clearly states that people with disabilities must be able to enjoy programs and services is the most degraded. And so the Allstate decision was something I think a lot of people at the public didn't hear about. But for the disability community you know some of us talk about it and are Brown versus the Board of Education Is it because that it really establishes a

fundamental right to be part integrated in the community and to receive services there. So. Our community now is working on a state by state basis to try to get. Every state understands what the Olmsted says it means and. To start shifting resources. Away from its words Community Support Program. You talked a little bit ago about unemployment among the disabled community and how high it is. Is that is that primarily an issue of employers being unwilling to hire disabled people or does it also have something to do with with infrastructure so that access and having appropriate tools for people to do work that's not there and that perhaps employers are willing but they face barriers

in employing people who are disabled. I think there's a number of factors that account for the. High unemployment rate. I do think part of it is subtle and sometimes not so subtle. Or workplace discrimination just the general discomfort with disability feeling like I don't know what this is going to mean for my other employees and for my company. So I just don't know if I want to take that step. You know so there is some discrimination. There is also a lack of awareness among employers about what their responsibilities are. Who are the employees with disabilities in terms of providing workplace accommodations. They don't understand how easy that usually is. They don't understand that perhaps by spending a little bit of money or even making modifications in the

workplace that cost little or nothing they can make a very big difference in the ability of the void to perform just as well as anyone else. So there are a lot of inflation really don't understand what kinds of accommodations are available and how to implement. So now the other side I think you need to see Philip. Community there's a real fear. He'd employ a bit of a people. Because we're in a situation to where. So what if the benefits that people depend on for very some really essential services health care benefits like Medicaid for instance. Still do largely depend upon a declaration of property and inability to work.

Medicaid for a lot of people with disabilities provides things that they have to have you know to live independently such as. You know a personal assistant services ongoing for said medication durable medical equipment like wheelchairs. And even things that your average employee health policy does not cover and so it can't be replaced by you know getting good. The event and so people are understandably reluctant to services that are essential to their lives and well-being or even for a very good. There's been a 100 vacancy by the disability community in recent years to create what we call work and said or to eliminate work disincentive within the benefit structures so that you know there are

programs. Where probably an individual can accept a job and earn a paycheck under certain circumstances they can reap the benefits that they need to have. I'm not talking about the VAT benefit but again the health care and support services that that is not available to them through the employer to help spread. Some things are improving in that regard but I think it's still. A pretty major factor in our unemployment rate. Maybe at this point I should introduce Again our guest for this part of focus 580 We're speaking with Laura Hershey. She is a disability rights activist and journalist. She's a published writer and poet. She works as a consultant with different organizations who are interested in improving their efforts to serve people with disabilities. She currently is spending some time as a guest in residence at unit one on the campus.

And maybe I would mention that she also writes a regular web column about disability issues and that you can if you have access to the Internet you can go to the her web page and see some of her poetry read some of her web some longer articles. And probably the because the address is rather long probably the easiest way to find her is to pick your favorite browser and just put her name in. That's the way I did it. Laura Hershey spelled h r s h e y. And you can have an opportunity there to read some of her writing. And of course questions are welcome here 3 3 3 9 4 5 5 toll free 800 to 2 2 9 4 5 5. Yesterday President Bush announced something and he made a proposal and actually he apparently had talked about this during the campaign as well. Proposal for something that he called the new Freedom Initiative which is a plan that

over five years would provide a little over a billion dollars to do things like increase research funding for assistive technologies would provide money for low interest loans so disabled people could buy computers and other equipment so they could work at home. Also put some money into transportation increasing transportation for people who have special needs. I wonder how much you know about this and and what you think about it. Well of course you know I followed all the both candidates are all all ahead of the statement staring. They can't. And. George W. Bush does seem to be. Now talking about again some of the. Ideas that he put forward during. The campaign. I'm all for assistive technology. And the solution

to. The phones we've been talking about and inflated the institutionalization of things like that. It certainly is not the only solution. It's it's kind of. You know people get excited about it. Assistive technology because it's because of technology it's you know it's needed. It's fun to see how it works it's fighting to think that somebody can. Can do something independently using a special computer and something like that and it is very there's a great deal of progress there that in fact already people are using it. Inside knowledge he is making really big differences in their their lives and their opportunities. Transportation is also really important. I think I would at this point and I'm kind of reserving. Judgment on the Bush administration's commitment to the disability

community. I say that partly because of his record in Texas. Which is not so good considering it's kind of timely right now and. This has not made a lot of media attention. But. Starting next week there are nine people with disabilities. The Texas two are going to be serving jail fence during next week. They were arrested. A little over a year ago at the governor's dance it is said. Because they were protesting against Governor Bush his lack of commitment to implementing the decision I was talking about a few minutes ago. That is it is lack of. Commitment to increasing support programs in the community for people for they don't have to be. It's to

socialize and in fact I believe Texas was one of the states that signed on to an advocacy group that the supreme court opposing the community integrates the mandate of the Olmstead decision. So. He doesn't have a great record for. Representing our interests and you know I think it's important for people to be aware that these night vigils. Are going to be sitting in a jail cell next week because Governor Brown chose rather than to take not with the issues raised by these protesters. He chose instead to have them arrested and that they were convicted and now been serving up to a week. In jail for that. We have a caller to bring into the conversation. And of course anyone who's listening. Call him with question or comment here in

Champaign-Urbana 3 3 3 9 4 5 5. Also we have a toll free line that's good anywhere that you can hear us around Illinois or Indiana any place the signal travel 800 to 2 2 9 4 5 5. We'll start here with someone in champagne and it's line number one. Hello. Oh. This is. I'm calling because I'm curious you keep talking about the disability community. Well I've had a disability for all of 55 years and my impression is that people with disabilities are by and large not a community not united. The only thing in common you can point to is some sort of disability. Otherwise they're all over the religious and political spectrum. Lol I'm wondering to what extent this community you're talking about even actually exists. That's a good question. The disability community is extremely diverse.

He's absolutely right. It's the one. It's the one minority group that crosses over every single other demographic group in society politically racially gender you know extremely diverse. And partly as a result of that we haven't been very united for many years. I think another factor that has kept. People with disabilities divided for years. The fact that the systems that were set up to provide services are you know in other ways to serve their communities well divide it up by the feds. So you had one. You know what we're going to. They said that their client People want organization to represent people with hearing impairments so they want to represent people who are

finally quite injured. All these different you know constituents often. Not paying attention to each other and joining in with each other in any kind of a coordinated advocacy effort on Ellen I'm sorry not only do they not coordinate sometimes they're in direct conflict. For example the mainstreaming of students and to stream classrooms is not uniformly desired by all of the different groups are talking about I'm saying you know here for example of the deaf community is not uniformly united in saying we want all our deaf students in mainstream classrooms. You know and I mean I think on that issue party the reason is that schools have done a very bad job of integrating their students in such a way that they're still able to learn in their primary language American Sign Language and you know there's still a lot of

failures because and this is true of a lot of different people with all kinds of disabilities. The solution for us is a good idea than that poorly in many instances and sort of turn people against the idea. But what I was going to say is that I think. In terms of at least political unity I do think things are changing. We've talked about the Americans With Disabilities Act which became an ID. That was really a very coordinated united effort. There was a lot of solidarity among all different kinds of groups all kinds of disabilities kind of the political differences. You know the disability organizations that represent that usually stay free. They're only focused on their agenda really came together and worked

together and if they had we would have the benefit there were several times when the presidents of the 88 tried to undermine or weaken it. When it was going to Congress by carving out what group or another to say you know this shouldn't be protected. People with AIDS and HIV and particularly there were efforts by Sun very conservative senators to say you know people with this particular disability should not be protected but didn't. And everyone held firm and said. This law has got to include all people with disabilities. I don't think the independent living that has brought a lot of people together in the cross disability activities. Not everywhere not perfectly but more and

more you're finding that you know local independent living said the state white advocacy groups and so forth. Both the membership in the leadership. Really represent a variety of disabilities and a variety of. Other kinds of demographic. I mean the other day I went to visit Tate said there in Arvada which is the local independent living and advocacy group here and I thought to this but. There were people using wheelchairs there were people using crutches. There were people there were people that mention it. This is out of a small step of about 12 or 14 people. So I do think that we are developing more cooperation and more unity. You know sometimes you're right we do work at cross purposes. That's the nature of a

diverse. Community with people who have a lot of strength of pinion that it's not good when it's advertising effort that wouldn't cause us to challenge each other and learn from each other. And right now I think it is good. Let's talk with someone else this next caller is in Joliet and on the line number four. Hello. Thank you very much for taking my call. I have a question and a comment. In the 60s I demonstrated down south for the segregation issues and I was thrown in jail more than a couple of times and later on in life I became a police officer and then Normally no one gets arrested for demonstrating as you said what happened in Texas. Normally you get arrested for doing something illegal while you're demonstrating you know I was just wondering what exactly they were charged with. It and secondly my thought was a disabled. Man and

Boy sometimes you could be a real mean costs and the sometimes people get a notion that disabled people can get in trouble and care cause a ruckus and I would just like if you could address again the issue of people being put in jail and in Texas for demonstrating it's Think maybe presented in the wrong light. Thank you I don't think that they certainly were doing civil disobedience. And I'm not trying to say that you know he didn't know what they were doing or they didn't want to take that risk. My point in telling him that the place had ever telling them is that you have the reasons why they were doing that in that place. Then Kevin Everett's was actively opposing their community integration and civil rights of people with disabilities and with that difference he said maybe he would have had an opportunity to change

his position and he didn't. Instead he has to you know have people arrested again. Yes they were doing I'm not arguing with the the the you're approach and your cause. What I'm saying is that I know when I was run down in Alabama and Georgia My intention was to be arrested. Yeah. To say it. He just arbitrarily arrested these people. I didn't evidently but he did have a choice between living in a direction that would be supportive of the rights of people with disabilities to live in the community. You know now I understand these nine people chose to do civil disobedience. They got arrested. They understood that that was the thrust of the consequence. But in Texas and indeed across the United States there is in the United States is one million people living in nursing homes.

Now those people didn't do anything illegal and yet they are just confined in fact if I had a choice between being one of the bush not you know one of the people down there that getting ready to spend a week in jail or being one of those 1 foot 9 million people in either event I would take that jail sentence. Because when you're in jail you know that you're going to get out you know what your sentence is and it's with. Institutions that can fight people with disabilities. That's usually a life sentence. Here again those people did not. To violate the law they did not do anything to deserve their captivity. I think that is part of you know at least symbolically one of the reasons why many of us in the disability community have done civil disobedience around this is it will be better this time

because I agree wholeheartedly in your calls and you might be 100 percent right but initially you gave the impression that saying that they were out there are committing civil disobedience with the idea of proper probably being arrested. That makes it more clear. Thank you very much. And you know that this civil disobedience that the disability rights movement has not been it does result in some of us being arrested. Usually. Usually the protestors have been released after a few hours a day or two. And there are several reasons for that I think one is. That in general jails don't like to try to accommodate a lot of disabled people. It's you know they're not set up just like a lot of society. They're not there. They still have their years and they don't have the right. Infrastructure. So. You know I didn't mean to say that these protestors were

you know naive or. It's you know. Victims that don't know what they're getting into there in fact I think they're heroes because they're. Doing this to defend the rights of all people with disabilities and live in the community instead of being imprisoned in. Institutions. What no I'm curious what what was it that these people were charged with. I'm not sure what the exact charge is easily with a situation like this. It's something like trespassing or obstruction. You know anybody that's civil disobedience around other issues. You know I have some idea that that it's tactically it's pretty different with when the protesters are people with disabilities. But. You know again I don't know what the exact threats were but

usually it's something like. You know what's that. Yeah well we're a we're past our midpoint here I guess I should introduce Again our guest We're talking with Laura Hershey. She is a published writer and poet. She has a number of years experience working professionally in the fields of disability rights and also in journalism. She is now visiting the campus of the University of Illinois spending some time as guest in residence at unit one on the U of I campus and is talking with us this morning from there. And questions comments of course are welcome. The number here in Champaign Urbana 3 3 3 9 4 5 5. We also have a toll free line that's good anywhere that you can hear us 800 to 2 2 9 4 5 5. And I do want to mention again that if you're interested in reading some of her writing there are some examples of her regular web columns some longer pieces some poetry you can find all those on her web page.

And probably the easiest way to find that is just go to your favorite browser and put her name in. Laura Hershey last name spelled h e r s h e y. And you should be. Will to find it you can look at it there and questions again are welcome. Three three three. Wy allow toll free 800 to 2 to double. While I was looking at some of the some of your crypt commentaries and one that really struck me it was one that you wrote last year but I think it it applies because right now again because it has to do with the television series Survivor. And I was I was kind of tickled by it. The you are talking about the way you felt about the show. The first line of the piece is I just found another reason to kill my television and you and say well I probably won't but it was this last summer's series of Survivor and you talked about your response to it and you write for the Ron in the

piece you write here in a nutshell is the message of the program that is the strength of a group depends on and justifies getting rid of its less powerful members. Do you think that indeed in society in American society that we have such a strong. Ethic like that that somehow human if we don't think about it that that this survival of the fittest idea is embedded in us and that shapes the way we think about disability. I think that's there I hope it's not. The predominate. I think it is. Society but I think it's. It's there and it's signs of precedent and programs like Survivor at the. End and some of the political battles that we face in the attitude that you know children with disabilities just don't belong in the

regular class for because they're going to slow things down. You know they're going to make they're going to interfere with. The education of the regular children. I do think there is that. That strain and. I think it's something that we have to bring out into the open so that we can criticize it. You know in fact this is not what makes a society that are stronger. This is what undermines society went that way. He's creating different categories of people that are expendable and one way or the other either. You know segregated evidence so it isn't self-contained separate class for in schools or you know that all the different ways that we sort of. Call it cut people loose have

people from our society. Does that answer your question. Yes yes I think it does. We have another caller let's talk with him this is a person in Kankakee line number four. Hello hello. Yes good morning. Yes my question is concerning early intervention children 0 2 3. Governor Ryan has allegedly cut a lot of early intervention programs. And we the consumers have been notified that children who are born with disabilities will not receive intervention. Unless they show a 60 percent delay. And I'd like for her to comment on that. I don't know very much at all about Illinois politics. You can say I'm from Colorado but. If that's what you're saying is true

which I'm sure it is and. I think it's a. Very That thing you know it's that it's clear that children with disabilities. Do that and if they get support services early. Parents do better at meeting the child those children need if they get resources and support early and. You know creating arbitrary cutoff lines of what was it 60 percent. No way that's correct. There it is just like another way to eliminate people from the services people who need it. And. That happens. From time to time and in various disability programs. When one group or another wants

to make budget cuts. They either decide Well some people aren't disabled enough to get the service. Or they'll decide some people are too disabled to get the service. And the way that they measure people is usually pretty pretty arbitrary too. So. You know I think I can stand there in a very general way. Since I don't know details of a nearly situation but I think all programs or all programs designed to serve people with disabilities and supported should be based on what that person needs not needing a particular measure or a particular scale of impairment. I see this oftentimes in eligibility criteria for

free and home of support services that leave back in Colorado where I read that you have to prove to me that certain level of disability. You don't just have to prove that you need to have health services for its analysis that services in order to function in your home but rather you have to prove that you are really you know you're more disabled than arbitrary cutoff lives. Would you view it as an act of discrimination. I think I live in L.A. because every day it's a good one. I have. Sold it with the ability you know you know it's kind of a group of children who were formerly. Eligible for services who obviously are disabled who do have that need. And it's. These services are not available for those children.

Thank you thank you for the CO other questions comments are certainly welcomed We have about 10 minutes left here in Champagne Urbana if you like to call the number 3 3 3 9 4 5 5. And we also have a toll free line that's good anywhere that you can hear us that's 800 to 2 2 9 4 5 5. I recall some years now ago interviewing the author who'd written a book looking at the history of the movement for disability rights in the United States talking about how disabled people often are pretty distressed at the kind of images of disabled people that one sees in popular media. And he said that it tended towards one of two kind of stereotypes on the one hand there was the poster child. And then on the other hand it was the kind of person that he called the super crip which was kind of like you know just to cite a ridiculous example it's like you know the person with no legs that climbs Mount Everest and

that he says that people who are disabled are really distressed that. Those are the images that are offered and not only does that give the wrong sort of really the wrong image of what disability is about it also doesn't represent the kind of diversity that you see in the disabled community. And the fact that there are a lot of folks who just see themselves as sort of just plain folks and certainly aren't one of the other of those is do you think that that's still an issue. It's still very much that is you know that you know we get. These two stereotypes that represent a little different when it is but I think what they speak to. Is that you know that a person with a disability is. Really pitiful. Just you know just a hopeless case. And is eternally needy and unable to contribute and that they're

therefore objects of charity because of their their personal misfortune. People with disabilities. Have no needs whatsoever. There are just so you know. They're just. Able to do everything no matter what the environment but without any type of additional support. Both of these ideas really. Not only do they misrepresent that they really. Deny the reality of how we deal with and what our needs are. In fact for most people. With disabilities. We do have needs related to our disabilities some people need accessibility ramps instead of stairs. Some people need a. Sign language interpreter have to communicate with others. Some people need modified work hours so that they can hold down a job given their stamina

level. Some people need support services to assist with daily living activities like dress a good. Thing and keeping the house in order to live in their own home. They need these kinds of things. And so most of us really do have needs and most of us also have a lot to contribute in society. We can not only think we can give. We can you know contribute to our neighborhoods to the workplace to our families. To political action to. Volunteer acts and. All kinds of ways that people with disabilities can be. Important valued contributing veterans of society and still. Have needs that that must state that. And so I think maybe it's harder for the

for some in the media and some of the public to get hold of the idea that you know you really really did see that they have that society. You can't just you know give somebody a really cool racing wheelchair and they're going to be just fine. You don't have to. Know Grant if that's you know they could live out you know I think it's I think it's harder but more important to recognize that people that the environment will be to be modified their. Supports will need to be available. You know for us to make the contribution that we have to make and we really do. So you know we're not the poster child because we have what to offer and with that the different grip because. You know disability means that in inaccessible for a given environment it.

Needs to be changed to be to become excessive at four that. You mentioned in response to earlier caller the fact that you live in Colorado and one of the commentaries that I looked at that on your website it talks about the fact that you always look forward to the Denver International Film Festival and. You talk about a couple of movies that you saw and this was a commentary from from the fall of 1909 where you talk about one that you thought was good and one that wasn't. And I'm just curious if you might talk a little bit about what you see and in popular media and whether in fact you think there are some examples that you would really point to as saying that you liked or that there were some important points made about disability. Some things that relate to you stand out. I think there have been some really good independent films. And of

course these are harder for people to find or to see. Here on campus. Here's a night we watched a film called when Billy broke his head and other tales of wonder it's a documentary filmmaker in Minnesota who is. Brain Injury and it's kind of his personal odyssey going around the country and meeting. Various activists and also confronting. The issues that face the disability community. It's very well done. It's very funny and it's. You know it it really helps people understand. I think what sort of some of what the community is is that so that's a lot but that's pretty hard to get a hold of it can be updated through a magazine which is. Very thin to Palooka other than that I don't have their address. But it's every

I think of the more mainstream media. You know there's good and bad there is. That and I'm trying to think of precise examples. Maybe maybe some people but probably it will be able to think of. But I think generally what you see is you know occasionally someone with a disability or just in the movie as a regular character and that's great because you know we need to be visible or you could be seeing you know all types of lots of late 70s. And it seems very natural you know when someone says there as a coworker or whatever and other times there's been a sort of pretty. I guess you'd say it's faltering. You know I just felt for it that. You know that people with disabilities are a certain way they're either really why the or

really I have just been. You know various stereotypes and. So it's been really not fully c of it. And again I'm sorry can't they give any examples that I study this letter that they did. Media images but. Well magine what that says in part is that there aren't many images of disabled people probably one one way or the other. I mean in fact there are a lot it's like you know a lot of the big blockbuster movies somebody did a little study informally lots of. Winners of the Best Actor Academy Award for like the last 20 years. I think about a half or maybe even more of the winners of that particular award where non-disabled that praying men with disabilities playing you know

characters with a disability. Examples would be just enough and as Grant met. You know when it sent an overwhelming. Yeah Tom Cruise. Good boy have brought on the 4th of July. Louis in my left foot and I would say that each of these days in terms of fraternal disability. Really good things and some really. Negative things like for instance. With three man I think Justin I think did a really. Good job of portraying a person with autism. And I think it was a very well-written story and all that. When I was really disappointed in the movie it was at the very end. Because he's you know his brother wants to get him out of the cities so the brother br. You have to live with him. But he finds that you know he can't

singlehandedly meet all of the support he needs. That is for their hats. And so the only option that is to send him back to the institution. There's never any discuss it. You know the kinds of services that support. That in fact many adults with autism and other disabilities use to live independently. You know we have to be met by a single family that varied. There there are programs and resources that get you know points I wanted to give you didn't you know were at the end of our time in fact I'm past so I'm afraid we're going to have to stop but I want to say thanks very much for giving us some time and we appreciate you talking with us. Thank you. Our guest Laura Hershey she's a disability rights activist and journalist currently spending some time as guest in residence at Allan Hall on campus.