Disability²

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Convicted murderer Jack Kevorkian was freed from prison yesterday after serving only eight years for the murder of Thomas Youk, and serving no time for the murder of at least 130 other individuals, mostly women, with disabilities. While most convicted murderers, particularly those suspected of mass murder spend the remainder of their life behind bars, if not sentenced to death, Kevorkian, was never even charged in most of the deaths, because his victims were disabled. This is disability discrimination at its core.

Yet, many Americans don’t get it. Progressives, people I generally agree with politically and ideologically, remain unable to grasp how their quest to live life without experiencing disability trods on my civil and human rights. Yesterday, after Kevorkian’s release, columnist Russell Shaw, a Huffington Post blogger, has a post entitled Disability Advocates, Get Over Your Fear of Us Right-To-Die Folks.

Shaw states:

From where I sit, I don’t see how compassion in dying has anything to do with disability rights. For those of us who want to offer dignity to those whose pain can no longer be nursed, the fact that our society too often treats the disabled as second-class citizens also is a powerful assault on our humane sensitivities.

Mr. Shaw continues to trivialize our opposition to assisted suicide as a “paranoid” fear that non-disabled people simply want to have us killed.

The problem with assisted suicide is that if I, as a pwd, were to become depressed and ask to die, I could get assistance to do so, solely because of my disability. Depression wouldn’t affect my intelligence, I could very convincingly make a case for death, and I am certain that my decision would not be questioned by physicians. I am doubtful that I would be given treatment for depression, instead, I would be allowed to die.

In Oregon, home of Mr. Shaw, and the only state with legalized assisted suicide, I could get Medicaid coverage to pay the costs of my physician assisted death, but not for the attendant care that I need to live a happy and productive life. My ability to obtain the drugs that enable me to control pain, and minimize some of the effects of my disability is severely curtailed in Oregon. Under these circumstances, the “choice” to die is much less of a choice.

I have had medical professionals suggest that I should simply “give up” and “let nature run its course,” rather than use technology to continue my life. I’ve had policymakers tell me that the cost of my attendant care prevent young children from being vaccinated, and that the cost of my attendant care prevents teenage mothers from accessing prenatal care. Fortunately I live in a state where policymakers listen to the disability community, and we have managed to preserve community based services for people with severe disabilities. The same is not true in Oregon.

That is why assisted suicide scares me. It’s much cheaper to offer me death than attendant care, and that would be my option in your beautiful state.

Guarantee that I will continue to have access to health care, community based attendant care, and the drugs, including the latest pain pharmacology and technology, and then I might be less afraid of right-to-die advocates.

Your right to have a state-sanctioned, medical establishment proctored death, interferes with my ability to keep on living. If I can’t access heath care and attendant care, I don’t have a choice to live. You, meanwhile, always have the option to die, it just might not be as pretty as you would like.

Many right-to-die advocates have attempted to distance themselves from Kevorkian, but he remains a very real threat. For years, Kevorkian produced histrionics about his fragile medical condition, and plead for a pardon or commutation of his sentence. Fortunately, his pleas were rejected.

Of course, upon his release, there was little discussion of his frail medical condition. Instead he hugged Mike Wallace of 60 Minutes, the corespondent who aired his murder of Thomas Youk.

An AP article about his release, summed up Kevorkian’s continuing risk to people with disabilities in the final paragraphs:

Kevorkian has promised never to help in another assisted suicide. But Ruth Holmes, who has worked as his legal assistant and handled his correspondence while he was in prison, said his views on the subject have not changed.

“This should be a matter that is handled as a fundamental human right that is between the patient, the doctor, his family and his God,” Holmes said of Kevorkian’s beliefs.

Geoffrey Fieger, Kevorkian’s former attorney, said Friday that he expects Kevorkian will spend his time enjoying his freedom, even though he will be on parole until June 1, 2009.

“He’s on a short leash for the next two years,” Fieger said. “They can pretty much control his behavior. After that, it will be another story. After two years he no longer is going to be under their thumb as he is now.”

Fieger said once he’s off parole, Kevorkian should continue assisting people who want to commit suicide.

And for those who simply see disability rights advocates as shills for the right-to-life movement, I encourage you to read Diane Coleman’s testimony before the U.S. Senate Judiciary Subcommittee On the Constitution, Civil Rights and Property Rights. I leave you with portions of her testimony where she states:

The first thing I want to emphasize is that I’m sick and tired of the hypocrisy on both sides of the culture war in this debate. . . . I’m sick and tired of our opponents on this issue, often our liberal or progressive allies on other issues, who over simplify the dangers facing disabled people who depend on others for basic needs. . . . I’m also sick and tired of our allies on this issue, often our conservative opponents on other issues, who see assisted suicide and euthanasia as violating their principles, but see no contradiction as they slash budgets for the health care we need to survive.

Diane, I agree 100%.

With all great intentions, I created this blog to write about issues affecting parents with disabilities. The problem is that not everything I want to say is directly on-topic. I just get out of the habit of writing. I’m going to attempt to reform my ways and get this blog active again, and get as much in about parents with disabilities.

Part of writing about parents with disabilities is writing from my own perspective of being a parent with a disability. For nearly the last month I have been battling a severe eye infection and corneal ulcer that resulted in a cornea transplant last week. This has meant that I have been home, and directly involved in the afternoon homework battle with my middle daughter, Asiza, who is eleven. Because I can’t see her worksheets, I use attendants to help her with the worksheet part of her homework. However, each day she also has a spelling and reading assignment. I have, much to her chagrin, become more involved in these portions of her homework routine.

I try hard to use natural and logical consequences with my kids. Even though they all have developmental disabilities, I find natural and logical consequences to be effective most of the time. Their effectiveness is typically directly correlated to my ability to implement them, and I frequently fail and threaten all kinds of vile punishments that both the kids and I know will never be followed through on.

This afternoon I didn’t feel up to a word by word battle over writing sentences using her spelling words. I know when to pick my battle. I know the kid really doesn’t know how to construct a sentence. While I could walk her through it for all 12 of her words, I’m not convinced she is really learning sentence construction, and I know that I am not. Like I tell Asiza, “I already passed 4th grade.” (And for the record, I hated my teacher, and I hated school, and it’s really a period of my life I prefer not to repeat.) I really didn’t care that her sentences all begin “I like. . .” or that “I like stormy” and “I like twig” really don’t make sense. They were done. I was definitely picking my battles today.

I really didn’t want any battle, but I simply had to draw the line at the reading. For a long time it was a struggle to get Asiza to do anything more than open a couple of pages in 10 different books during reading time. For the last several weeks, I have been insisting that she actually pick books that she can read, and trying to work a bit on comprehension with her. After the daily battle to pick a book within her reading level, she quickly read aloud a few lines on each page, skipping 10 or 12 pages each time she turned a page. After about 5 minutes, she stops and claims she is done. Still in pick my battle mode, I said fine and told her to get another book. This was not expected, but she did get another book. Five minutes later, she exclaimed “done!” again.

I knew that she wanted to go outside where her sister was helping pick up trash in the yard, but I decided that was not one of her choices. I calmly explained that she had two choices: read for 30 minutes, or go to bed. She read a few lines on another page and again exclaimed “done.”

I again explained the choices, and told her that a failure to read would mean the default choice would be bed. Clearly she did not take this to heart. After several minutes of opening and closing the book, slamming it down, pounding it on the floor, and far too many warnings from yours truly, I told her that she made her choice: go to bed.

She jumped up, put her book away, and headed outside. I explained outside was not a choice and that she needed to go to her bed. I told her that I didn’t care what she did there, but she needed to be on her bed. My smart girl said, “I didn’t choose to go to bed.” I again explained how choices work, and by not reading, she choose to go to bed.

“You’re not fair.”

Oh yeah, I was more than fair when I watched her sulk, and I explained this.

“I didn’t choose this, and you said I had a choice,” she protested.

“See, you are smarter than you act,” I told her. She didn’t get that but asked if she could read then watch TV. No, but you can read, play a game, put together a puzzle, play with your dolls. . . It was a long hour before dinner while she was cloistered in her room.

She was allowed out to go eat dinner. She isn’t a super speedy eater, but she is relatively fast. The child who asks me to cut her noodles because they are too hard to cut, had managed to turn a plate of lasagna, salad and bread into a hour long meal. I was not picking that battle. However, when my aide came in to my room to tell me that she was trying to cut a 1″ square of lasagna into 10 bites, I again said “you are smarter than you act.”

After losing legs, Reggie Colton found a role model who inspired him (more…)

One Tough Lawyer

The Denver Post featured me and the CRPD in an article that was posted today:

Last year, after earning her law degree from the University of Denver, Lucas launched the coalition’s Center for Rights of Parents With Disabilities. The center provides legal representation to disabled parents. Some have experienced discrimination; others face the risk of losing children because of their disabilities.

(more…)

No limits for plaintiff in Kmart disability lawsuit

Carrie Ann Lucas has come to terms with the disability that has taken her hearing and her sight and her ability to walk.

(more…)

I’ve been swamped with work, so have not been updating the blog as I should I have been a plaintiff in a nationwide class action against Kmart. The case was filed 7 years ago, and finally settled. You can read more about it here:
Disabled Win Kmart Payoutand here: Kmart Settles Disability Access Lawsuit

Well… Murderball lost to the Penguins. I will refrain from my urge to go buy an SUV to increase global warming. I admit, the penguins were cute and all, and my kids liked them, but they were — penguins. The girls liked Murderball better. March of the Penguins was nothing more than a long Nova/Imax science film, the sort of thing we can find on PBS every week. I really do enjoy watching Nova-like shows, but they aren’t deserving of an Oscar. (more…)

After authorities threatened to place their children in foster care, an Israeli couple set off fireworks in the Nazereth Shrine sparking a riot. (more…)

This time with a story about little people on Monday Febraury 27, 2006. Again it could have been worse. (more…)