"Assistive technology is any item, piece of equipment, or product system that is used to increase, maintain, or improve functional capabilities of individuals with disabilities."
- definition from NOCK National Organization Caring for Kids is a nonprofit organization that provides assistive technology to children with disabilities and chronic illnesses through fundraising and other efforts

Of economics, the value of a human life and broken hearts

In the NY Times, the article "Pinning down the money value of a person's health"appears today in the business section talking about the economy of health care and its application to human beings.

I've been posting a lot about this topic albeit in different areas. We are facing drastic cuts to the Talking Book program for the blind and elderly which would disrupt their access to books.

So what is the value of the joy of reading? Of knowlege? How do you put a price on the effect of such a cut to people who cannot read a book? Imagine two, three years from now walking into Barnes and Noble bookstore and being unable to read any of the books on the shelf. Then you find out that there's the Talking Book program which was designed to open up the world of reading to the disabled. It is the only free program available for people. But you discover that because of the cuts back in 2007 the program is in disarray and materials aren't available.

[visual description: A little girl is shown holding a cassette player listening to a book on tape. To her right is a green cassette container.}

If only I had known , you'd think. I would have spoken up. How could our legislators let this happen?

We need to recognize that we let it happen when we don't speak up and let our legislators know what we think.

We need to look around and take responsibility as citizens for what is going on in how we are applying economics to the value of a human life. We tell people on Medicare they cannot have the wheelchair they need to go outside. That's the policy. So people are housebound for years. These people aren't celebrities so there's no camera whirring to show that they are locked up . There's no countdown of 23 days or 45 days for them. They are in house arrest for an unlimited period of time.

It's a disgrace. If we believe, as we profess to, that all human beings are equal and have inalienable rights - where are those rights in our system as it is where economics is the trump card that divides those who have access to basic health care and access to assistive technology?

Does anyone want to go tell the family I just talked to whose little boy can't get out of the house because they cannot afford to get him a power wheelchair and have no insurance coverage for it that their son has inalienable rights? I can't say that to them with a straight face. I believe it. I believe that child is equal to any other person on the face of this earth. And I believe that most people do. But we've been lulled into a state of inaction where we fail to take personal responsibility, even though we're in a democracy, for the policies our lawmakers set.

There are so many other people out there suffering because we are sitting by and allowing our legislators and our policy makers to apply economics to access to health care and assistive technology. When I post about such issues, like the Talking Book situation or the Right Wheelchair Campaign, I ask readers to join, to contact their legislators.

I do this because I hear the voices of those affected. In their voices I hear how their hearts and sometimes their spirits have been broken. No amount of money, no economic policy can fix a broken spirit or heart. That type of loss is unfathomable in any kind of equation.

The Right Wheelchair Campaign

[visual description: The Right Wheelchair Campaign logo is shown. A stick figure pushing a wheelchair is shown to the left and the words Right Wheelchair Campaign are to the right. The lettering and figure is white and the background is blue.}

United Spinal is running the Right Wheelchair Campaign - to correct the problems in the system with current regulations such as the In Home Medicare restriction that affects a person's ability to get the right wheelchair for their needs. I'd ask you to click above and take a few minutes to read some of the stories about how peoples' lives are being disrupted and how people remain housebound unnecessarily due to current policies- and being in the wrong wheelchair.

This situation is made worse by the high cost of purchasing a wheelchair. An ultralight wheelchair's price starts at several thousands of dollars once you've customized it and can run as high as $6000. An electric wheelchair starts between $4000 to $6000 and can run as high as $12,000 - or more. (Comments are welcome as to prices you've found - I'm guess-timating here to give readers an idea.)

If you agree that these policies need to be changed, please join the Right Wheelchair Campaign.

"Let the cripples demonstrate"

[visual description: Jack Kevorkian at a press conference on Tuesday after his recent release from jail.]

sayeth recently freed Jack Kevorkian according to a news report in the Detroit Free Press which describes Kevorkian's reaction to Not Dead Yet, a disability advocates group and their efforts to make their opposition to assisted suiciide known through legal demonstrations.

It's sad that Kevorkian gets to use the media to belittle legitimate efforts by disability advocates through name calling. This kind of behavior has been coming from the right to die folks since his release (if you click assisted suicide, you'll see an opinion column by Russell Shaw that falls in this category as well).

But Kevorkian gets to make his point.

What are they so afraid of that they stoop to name calling and belittling disability advocates? It's because they do not want to address the legitimate arguments that are being raised as to the disproportionate number of assisted suicides Kevorkian did on people with disabilities, not with terminal illnesses. Instead of addressing this issue in public appearances, such as press conferences and his recent interview with Mike Wallace, Kevorkian instead tries to dismiss groups like Not Dead Yet via an old school yard trick - name calling....

...to make his point.

It's a very telling tactic. Language and disability (see my label below) reveals a lot about how people think. It can uncover attitudes or cause them. I'm not sure that Jack Kevorkian understands that some disabled people aren't bothered by the word cripples. Some are bothered by it when its used by able bodied people. Most,if not all, are bothered by it when it's used with negative connotations behind it...

....to make his point.

We should all, able bodied and disabled, be bothered by the use of language like cripples when it's used with the motive to demean disabled people. Maybe this kind of language is still okay in this country because, let's face it, it's used every day. .

Although maybe by using it publicly, without meaning to, Kevorkian is helping to make our point.

The Short Bus - a post

From the blog I Speak of Dreams, a post about the book The Short Bus which is about the author's experience of growing up in special education. The book is available at Amazon.com.

Enjoyed visiting this blog which was part of Blogging Against Disablism Day - many great posts/info about dyslexia.

Assisted suicide bill fails in California

Disability advocates and other groups have been active in preventing the legalization of assisted suicide. A bill proposed in California did not move forward due to their efforts and work. Advocates noted that legalized assisted suicide is a bad mix along with for profit medical care for many disabled and poor people.

Via SDS list serve

Depersonalizing Discrimination

One of the biggest disability stressors people talk to me about in my advocacy work is the difficulty they have handling incidents of discrimination. Discrimination ranges from subtle behavior and language to outright exclusion. Somewhere in the middle there is a wide variety of things that happen that you have to decide whether to tolerate, act upon or handle with a sense of humor or other skill.

I've had many people come to me who begin to feel a sense of erosion of their self worth due to repeated incidents of discrimination. They ask "Why is this happening to me?" instead of reframing it to a wider social picture: "Why are people with disabilities being treated this way?"

One of the skills that I emphasize to people with disabiliites is learning how to depersonalize discrimination. Basically it means that you take a step back and remember that the party who is discriminating against you because of your disability would act that way toward the next person who comes along with a disability as well. This helps put the incident into perspective and can keep it from being as damaging to your self esteem.

There is a form of discrimination that happens where it is very difficult not to personalize discrimination. Some people who discriminate against disabled people, particularly in groups, consciously or unconsciously will personally attack characteristics of the disabled person. They rationalize their refusal to accommodate the disabled person or include the disabled person by picking on personal traits of the person unrelated to the disability. In my advocacy work I use the word bullying to describe this behavior.

This kind of exclusion is very hard not to personalize because it is aimed at your perceived faults and the attackers are careful not to say anything about your disability. In fact they are extremely politically correct. However, it is very important to learn to spot it. When a group of people does this to you and it results in social exclusion, it's important to take a step back and assess if it's discriminatory behavior.

Why does this happen? Sadly it's easier for a group to find fault with someone whose presence requires adjustments than to make those adjustments. It's easier to just make them go away. It can be very difficult for a person with a disability to undergo an experience like this. The herd mentality of groups, bullying behaviors and negative attitudes toward disability combine to create a toxic atomosphere.

For example, I had someone come to me who was attending a women's social group for several years. The meeting place had to be moved because of her wheelchair and she noticed that the label "selfish" and the word "entitlement" started to be tossed around by some of the group members. Over time the labels continued to fly, such as "arrogant" and "difficult". By the time she talked to me, she was in tears. She told me she never had an experience like this in a group before she became disabled. This alerted me to the fact that this might not be a case where the woman really did have social skill issues or personality problems but was being discriminated against. Members of the group had effectively closed her out by labeling her - but never using the disability directly to do it.

I told her that her best option was to depersonalize the discrimination and reach out for objective reality checks, which she already started to do by talking to me. It's important to consult with members of the disability community to get feedback and do a reality check with people you trust and who know you well to see if your assessment of the situation is correct. You then need to consider your options in this situation. A lawsuit may be appropriate , e.g., if it's happening at work and your career is at stake. You also need to assess if it's worth putting yourself through any more of this behavior as well as what you can realistically do about it. Balancing these two considerations is crucial.

Since this group was directly related to her professional career, the woman chose to stand her ground, depersonalize the behavior and hang in there. Once she stopped personalizing the behavior, she reported that it was easier to cope with the group dynamics and shake off much of the negative behavior. By doing this, she not only stayed in the group but noticed that the dynamics improved based on how she reacted to the behavior.

This is not always the outcome in these situations, but knowing how to depersonalize discriminatory behaviors is a good skill for all of us to have. It can be a powerful tool against many forms of subtle (and not so subtle) discrimination.