Tuesday, July 27, 2010

What I think of, when I think of the Americans with Disabilities Act

This week marks the twentieth anniversary of the passage of the Americans with Disabilities Act, a landmark law that afforded people with disabilities the same civil liberties as everyone else. In the past two decades, many building codes have been reformed to improve accessibility and be mindful of physical obstacles. However, recent polls indicate that the disabled are still at a significant disadvantage in the job market. I heard a great interview with Sid Wolinsky, co-founder and director of litigation for Disability Rights Advocates, and Judy Heumann, special adviser for international disability rights with the U.S. Department of State, on Forum this week. Let me put this in perspective.

The first job interview I ever had was for an organic kitchen. I was to work as a dishwasher and cashier. Prior to this job I had worked mostly for people that I already knew. Before my interview, I reviewed the Americans with Disabilities Act to remind myself that I had no obligation to explain my insulin pump or excuse the fact that I was diabetic because it had no pertinence to how well I'd do the job. It seems like such a small detail now that I've worked several different workplaces and interviewed for hundreds more positions, but back then I was barely 19 and was still a relatively new diabetic. What exactly were my obligations to my employer? And, conversely, what were their obligations to me?

These are important questions for anybody to ask. One of the best things about living in the United States is that these are questions we are allowed to ask, if not expected to. If there's anything I've learned, it's that part of being a healthy human is knowing your rights and asserting them.

And there is one right I'd like to assert here, now: that students with diabetes in California schools have the right to authorize another responsible person to administer their insulin. As of last month, the Third District Court of Appeals in Sacramento has officially prohibited non-nurse personnel from helping students take insulin on campus. What does this mean? This means that schools are worried about the liability of having other staff members (or, heaven forbid, the students themselves) give the incorrect dosage and risk harming the kid. This also means that many fully capable type 1 diabetics must wait for an available nurse (which, in this county at least, means one or two personnel per district) or for one of his or her parents to leave their work and come to school to administer their shots. All this, so the kid can eat his or her lunch and have a "normal" day.

I understand the risks that miscalculated insulin has on diabetics, which is why I think the more the individual understands about his or her body, and the more they educate their friends, family, classmates and educators, the less they risk when treating themselves. This is a lot harder to do for a five-year-old than it is for a seventeen-year-old, and the fact remains that insulin is a potent substance. There is no easy fix for an issue this complex. I don't offer a solution, nor do I agree with what's been suggested so far. I just hope that kids of all ages are aware of their rights to understand their own bodies, and ask the people they trust to help them when they need it. The state needs to recognize that sometimes those very people (school nurses, parents, the child's doctor) can't be available every day at lunchtime when a kid needs a shot. That's why the kid and his or her family should be able to train and appoint a responsible administrator or friend--as backup, at least.

The ADA has achieved a lot in its twenty years, and it is projected to achieve much more. The path to civil rights seems always to be checkered, but at least along the way we can see the value in our experiences and create a platform for discussion.


gteamhj said...

OH MY GOODNESS, this is awesome. I'm posting it on my Facebook page and forwarding it to Ellen & Shelley who are coordinating the Disability Pride event in Davis Saturday.
You Know Who, who was there 5-31-84

L. said...

Am I understanding you right: that type 1 diabetics in California schools are NOT ALLOWED to give themselves their required insulin dose because they might mess it up?

As a diabetic for more than 20 years, I mess up my dose all the time. It's how you learn. It's also an INESCAPABLE fact of this grueling disease. But we make do, every day, all the time. We have to.

Also, Julia, what happened at your first interview -- did you tell them about your insulin pump? How did you handle that? There's more to this story that I'd love to hear!
Thanks, Leanne

miss J. said...

Hey! :)

From what I understand, the law prohibits students and their families from appointing someone not from the school to help them administer insulin. I don't know the age specifics so my guess is students of a certain age are allowed to administer it to themselves. One of my concerns with this law is that it might actually keep students from disclosing the fact that they are diabetic so that they have more personal control. I know that that's what I would have done if this law had passed when I was in school.

Re. my first interview: I waited til I was hired, then informed my boss. I've always done it that way because I know that once a contract is signed or an agreement is reached, the employer has agreed to hire me based on my merit and not my blood sugar. It hasn't been an issue to date. :)

miss J. said...
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