Monthly Archives: May 2007

(Un)Fair Housing for people with disabilities

My friend Charlie* is looking for an apartment. He uses a wheelchair and is visibly disabled. Although he can afford most of the apartments he’s seen, has good credit and excellent references from former landlords, he’s been turned down for every single one after he’s gone to look at them.

Why? As one prospective landlord bluntly said to him “I don’t want to rent to you. There’ll be problems because you’re in a wheelchair that I don’t need to deal with.”

This landlord was the eighth on a list of ten who turned Charlie down in a row. And the landlord was surprised when he was contacted by a local attorney who informed him that he violated the Fair Housing Act by discriminating against a person with a disability. Many of those renting or selling housing who act in discriminatory ways toward the disabled may find themselves in this position as the years go on. Expectations of people with disabilities have risen and some, like Charlie, will seek legal redress when denied housing.

Charlie told me that he wants to rent an apartment near his aging mother to make things easier. He’s willing to jump through the legal hoops of filing complaints and possibly suing to have the same access to housing that able bodied people have enjoyed in our society. Not only does he need to solve his own personal situation, but he is doing it for other people with disabilities who may not have as many resources as he does.

“If nothing else,” he told me, “maybe some of these landlords will think twice next time before automatically closing the door on a qualified tenant who has a disability.” And he adds “Maybe it will save some young person from hearing those words ‘I don’t want to rent to you’.”

To file a fair housing complaint, call toll-free at (800) 699-9777 or (800) 543-8294 (TDD). Or visit HUD on the Internet at http://www.hud.gov/complaints/housediscrim.cfm to fill out a discrimination claim online. Local Boards of Realtors will also accept complaints alleging violations of the Code of Ethics filed by a home seeker who alleges discriminatory treatment in the availability, purchase or rental of housing.

[*For reasons of privacy, Charlie is a fictitious name.]

Copyright 2007 Ruth Harrigan

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Giggles from an iron lung

The first time I saw my friend Andy put into the iron lung I felt frightened. And I wasn’t the one being put in there to sleep. She was.

I was visiting her with some college friends near the University of Michigan. Andy had just graduated with honors the year before, having attended classes in her wheelchair with her respirator in tow. And my new friends were her old friends. And they told me she was in need of an aide, someone to help her out at night to get ready for bed.

Her bed was the iron lung. No one had told me that.

I walked in just as Andy, all 82 pounds of her, was being put into the lung. The thing I noticed was her eyes. She kept them on my face and I hoped she wasn’t disappointed that I didn’t grin or smile at her. I thought it sucked that she had to go in that big iron thing.

Everyone else left the room. There was a mirror over Andy’s face so that she could look up . Her breath showed on it.

“They do that to make sure I’m still breathing,” she said.

I nodded, unable in my 19 year old self conscious state to think of anything much to say except “I guess that’s good.”

“Tell me a joke,” she said.

I couldn’t think of any. Then, of all things, I thought of a stupid knock knock joke. I told it to her before realizing the irony of telling a knock knock joke to someone laying in an iron lung.

Andy giggled at the irony of what I had done and couldn’t stop giggling. And when our friends came back in the room and asked what was so funny, she said “Ruth told me a knock knock joke.”

“You didn’t!” one of them said.

“I hope you don’t expect me to make the knocking sounds. I don’t think I can reach,” Andy said, her face in a huge grin.

Andy later told me about all of the different nervous reactions people had when they first saw her in the iron lung. My knock knock joke , apparently, ranked right up there in the top ten.

I did become her aide and her friend. And I spent many nights listening to giggles from an iron lung.

Copyright 2007 Ruth Harrigan

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Personal responsibility and self-advocacy

I receive a lot of requests from people with disabilities for free help with advocacy problems. Because I have a day job and only so much energy, I have to turn down most of these requests.

Some of the people who ask for the help of an advocate really don’t need one. Their issues can result from one of two situations:

1. There are ways for them to self advocate with a referral to information or
2. They are not taking personal responsibility for some of their choices which has resulted in the situation created.

The first situation is easy to deal with. I can give them a direction to go in and most people are able and willing to help themselves. But the second group of folks is very hard to deal with.

They simply do not recognize that their problems are of their own making. These are the people who , even if I took their cases on, would probably not cooperate with me when I tried to help them out. If I asked for information, they would fail to document things or accurately report things. If I needed a paper signed they would lose it. If I suggested they talk or not talk to someone about the case, they would call me a week later and mention that they had to go against my advice and they hoped it didn’t “hurt my case”.

Which, in the end, is why I’ve learned that personal responsibility is key when dealing with advocacy situations. It’s never good to battle against a situation where one person isn’t perceiving things realistically and it’s even worse to do so when that person won’t accept responsibility and help himself.

My Scottish grandmother told me when I was little that when it rained a person who had to go out in it could react in one of two ways: She could complain about the rain or bring an umbrella. Basic personal responsibility runs along the same lines: sometimes you can’t change a situation right then and there and there are always going to be things you can’t control, but you do what you can to help yourself.

I can’t help people who throw up their arms and moan about getting wet. If that’s their choice, no matter how many times I tell them where to buy an umbrella, how to open an umbrella or even if I lend them an umbrella , I can’t make them use it.

I believe in the end that people with disabilities all have to do some self advocacy. Checking to make sure that we’ve acted in a responsible way before we lament about the rain is the best advice I can give to anyone as a starting point.

Copyright 2007 Ruth Harrigan

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Disability, Social Integration and the Need for Community Education

There was an article last month in a psychiatric journal discussing the connectedness and social integration of people with psychiatric disabilities, emphasizing the need for services to consider this aspect of care and the skills needed by the folks who have psychiatric disabilities.

But what about community education?

Articles like this always get me thinking about the other side of the equation – the obstacles faced by people with disabilities when they try to integrate into society. One of our most vulnerable populations is people with mental health issues. Many of us with disabilities realize from real life experience that having social skills if you are a person with a disability isn’t the entire answer. If it was, the solution would be simpler. But we have to be careful not to discount the fact that social integration is dependent on the response of others – and society.

I remember years ago talking to a vet in a wheelchair at a tennis tournament. He had used a wheelchair for over 25 years and I was newly disabled. I explained to him how I was surprised at the social difficulties I was running into in some places and with some people and he replied “Well you’re going through shock right now.” He went on to explain that it wasn’t shock from being disabled, but shock from realizing that the reactions of some people were going to be so different because I was in a wheelchair. I tried to talk him out of that position but he wouldn’t budge.

Up to that point, I had blamed myself for every interaction that went wrong. Whenever I ran into a situation where I was excluded, I blamed myself. Then I read a few books about disability studies and began to understand better what that vet was trying to tell me that day – that barriers exist because of attitudes and other factors in our society.

I applaud and support those in the field of disability studies as they strive to introduce a consideration of the societal factors as related to disability into all academic fields. An article such as this , which discusses raising the expectations for integration of people with psychiatric disabilities, calls out for a discussion from those of us advocating for the rights of the disabled about the myriad of factors involved so that we can determine what needs the system can and should address. Some of the services do need to address the skill level of the person with the disability, but some of the services also need to address community education to create a more equal playing field for those who are de-institutionalized and about to enter our communities.

Copyright 2007 Ruth Harrigan

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My achey breaky advocate’s heart

Ask me why, in a system that does not require notice, those who are in violation of the ADA react with hostility to attempts to remedy the problems but then claim they are the “victims” and insist that they need a 90 day notice provision for the ADA?

I’ve never seen such a ridiculous idea in my life. Any notice that I’ve tried to give under the present act usually results in a temper tantrum, hilarious laughter, or – the most common reaction – it’s ignored.

This would all break my heart except that I am an advocate. I’ve been one for over 20 years. I’m not swayed by tears, insults, fists in the air, banging on furniture, slamming down phones in my ear, nasty letters or potty words. Words and phrases like “entitlement”, “aren’t other restaurants accessible? go there instead!”, “I don’t see why your client can’t use the toilet down the block”, and (my personal fave) “I’m grandfathered into the ADA!” no longer make me even blink an eye.

I could write a country song about how I find all of this unmoving. Like a woman wronged and left with five kids and no child support, I stand (or sit) alone in the face of accusations that I should not speak up about lack of access or accommodations for people with disabilities who want to work, go out in society and lead full and productive lives. The response is: “Sure, but go down the block to do it – go somewhere else.”

Years ago I wanted to be a songwriter. I could be cute right now and come up with some country lyrics to illustrate what I mean. But I’m too tired from advocating and I suspect we’re all better off if I just leave it up to your imagination what I might write.

Because my achey breaky advocate’s heart is not unique. It’s shared by all of us who push for the changes we need to achieve inclusion.

Copyright 2007 Ruth Harrigan

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Assistive Technology for People with Disabilities and the “Figure it out yourself” factor

I recently read an article in the NY Times which discusses how some school districts are dropping innovative programs using laptops for students after disappointing results. It points out various problems, such as students using the laptops to hack or play games rather than study. But the point that it raises which I found crucial is that more time is being spent on repairing the laptops than was spent on training students or educators to use them in their courses.

As a person with a disability who uses extensive technology to work, I know that any product I buy is only as good as the time I put into it. Generally the more sophisticated the device is in a technological sense the more time it takes for me to benefit from its use and achieve productivity from it. This takes a commitment of time on my part which is much higher because no training is available with many of these products – and often results in less producivity and utility of the producct than possible.

When I buy a copy of voice recognition software now, I no longer enjoy the level of customer service I did years ago. The product has been mainstreamed which is good but the company has pulled back on their level of commitment to assist customers with using the product. Fortunately, along with this, the product itself has improved and is easier to use, but it’s just not helpful to someone like myself who cannot afford even their best suited product for my disability, much less their training.

I also bought an electronic head cursor so I won’t have to use a head pointer. I found this product fairly easy to use, but when I had questions about it in relation to my disability, I was told that most people use it for gaming and I would have to “figure it out for myself”. I did but not without using many hours of time that I could have spent – well – working.

I could go on and on listing products that I’ve purchased that I need to do my job independently which came with no training even when they were marketed to people with disabilities. I added up the time I spend training myself on new equipment every year and it came to approximately a month of full work days which equals 160 hours a year of lost work time.

Lack of regulation in this area makes things dicey. Companies have no obligation to train users on a product. Some customer service people are willing to extend themselves for a consumer with a disability. Other times I am told that I “should” be getting these services through state agencies or through my insurance. I do explore the options and I am often left with a gap between the technology I so desperately need and the knowledge to use it most productively. At times I’ve paid for training out of my funds if that is cost effective – but it means that I can afford to get less technology I need, repair devices I am using or hire the help I need to do what technology still can’t.

Like the students and teachers who will lose their laptops because school districts saw no results, it makes me wonder how many people with disabilities never fully utilize the equipment they receive either.

Copyright 2007 Ruth Harrigan

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No more going around the block: Our right to be out in our communities

Every day the neighborhood bully sat on his bicycle around the corner waiting for the new kid in the neighborhood. He knew it and the kid knew it. The bully was 10 years old and half again as tall as the new kid who was just six years old. When the new kid rode his bike around that corner, the bully would dart in front of him, trying to knock him off his bike. Sometimes he succeeded but after awhile, the new kid came up with his own plan.

The new kid went around the neighborhood to see how many other kids this bully picked on. He found out there were at least five other kids this was happening to. So they decided one day to ride around that corner – together. They formed two lines of bikes – one to get the bully out into the open and the second to surround him and give him back a taste of his own medicine.

It worked. When the first two bike riders went around the corner, the bully attacked the first one he saw. He knocked the kid down and was just about to ride off gloating when he found himself surrounded by a group of familiar faces. He realized all too late that the roles had been reversed and he was on the cement of the road, his world turned upside down.

People who have been bullied sometimes have fantasies of revenge. They want to humiliate the bully, treat him or her the same way and let them “see how it feels”. Other people who are bullied become more convinced that the bullying behavior is inappropriate by anyone toward anyone . Still others just learn to avoid the bully – they just go around the block.

When I advocate for a person with a disability who has been “bullied” (i.e. discriminated against) – by the system, an institution, a corporation or an individual – I lay out their options for them after we’ve negotiated. I get a range of reactions. Some people just want to be made whole and have their damages paid while a few want to stick it to the other party and really make them hurt. There are many others who just want to make it easier for the next person with a disability to assert their right to be out in the open and not have to “go around the block” to avoid discrimination.

These reactions always make me think of the thousands of people with disabilities who never seek redress when they are “bullied” by the system or others – those who ride around the block, just trying to avoid the confrontation. I can understand that. Many of them struggle day to day with financial and health issues and may not have the energy to handle it any other way. Or they may lack resources, such as access to an advocate or the transportation or information necessary to get one. Or, sadly, they may not realize that no one should be bullying them in the first place.

Then there are the groups who advocate on behalf of people with disabilities. Right now ADAPT is fighting on our behalf to have Congress hold hearings on the Community Choice Act. They are being arrested to let our legislators know that those of us with disabilities do not want to die in nursing homes before our time but want to live out in the community. Unlike the kids who bully up on the bully to attack him back, they are simply asking for us to be recognized as people of equal worth and value in our communities.

As we all work toward better living conditions for people with disabilities, it’s important to remember that going around the block needs to become a thing of the past. Those who are most vulnerable in our population may need our help to realize they have every right to go where they want to.

Copyright 2007 Ruth Harrigan

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