Why is this tragic?

Because these two worked day after day to get this think through, after suffering loss.
They worked like dogs to get this passed. They did their best.

But, this leg was not brought by diabetics. It did not have ADA support, directly.
I’m not sure it does much of anything to helps us, once it went through the meat grinder of the legislative process. It has a sunset clause, after which it is unlikley to even exist.

It does take swings at the system, though. That is a big deal. That is difficult to do. So, maybe it is one step in a process to produce something better.

It has always raised the question, for me, why we are unable to do anything for ourselves. Why aren’t diabetics ever able to build legislation? Why are we unable to file in court like other illness groups? We have only been classified as legally recognized disability for ten years. We all know that the kinks have not yet been worked out. Why are we so lame? What is the practical benefit of disability status if we don’t build off fof that? We make me mad.

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Even calling “us” disabled really upsets people. I’ve heard people state that “only insulin-dependent diabetics” are disabled, only Type 1s, only “well-controlled” diabetics, and etc. I think a lot of it has to do with the persistent societal stereotypes of (all) diabetics as “people who have done this to themselves.” I’ve said it before here (and been seriously criticized for saying it), but we tend to get lumped in with addicts and alcoholics: sure, we may have some biophysical differences, but if we could only control our behaviors then we wouldn’t… blah blah blah.

Sorry for the rambling rant, but it comes down to this: many diabetics don’t want to be thought of as disabled; we do so much fighting about who the “real” diabetics are amongst ourselves that we can’t have a united front to pursue sensible legislation; many of us are as full of self-loathing as we are any drive to make things better for others; and we’re Americans (for the most part), which means we aren’t used to coming together and making things better in the first place.

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OMG, David. I understand that. I struggle in my own perspective on this. I think that I reconsile it by stating that the nature of my disability stems, not from the illness itself, but by the system that is built around me to maximize overwhelming obstacles that I have to overcome in order to participate in day to day life.

I dunno. If those two people who overcome the overwhelming loss of a son, it seems reasonable that we could consolidate our diverse perspectives into something useful that could benefit all of us. I dunno. Everyone hates the game.

You might be onto something in that we seem incapable of advocating for ourselves. Other people have to do it for us. Maybe that has something to do with the fact that everything is built off of other perople perspective of us.

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I think you are being too pessimistic.

For a long time in most states, thank to ADA efforts from ages ago we can buy insulin without a prescription.

JDRF and ADA both have long history in federal advocacy. https://www.diabetes.org/advocacy

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Do you know, Tim, that when you call the Epileptics to ask legal questions, they have a legal team sitting there waiting to answer questions. They consult with nurses on staff and call you back within the hour to talk about the law and medical protocols. They are sooooo good. We aren’t that good. We are good at tech. We are not good at lawyering. Cant be good at everything. The nature of our respective illnesses builds specific strengths, I think.

I’ve never tried to open an advocacy case myself with ADA but they seem willing to step up with individuals questions especially with regard with school or work discrimination. They have FAQ’s for many common situations that cite case law of previous work they’ve done, and there’s even a direct E-mail address for lawyers to call for legal advice.

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Found it! Thanks Tim!

https://www.diabetes.org/resources/know-your-rights/attorney-materials

This is where they sent me:

Bar Association Lawyer Referral Services: most state and local bar associations have these services. American Bar Association: abanet.org/legalservices/lris/directory.html or 1-800-285-2221.

Protection & Advocacy agencies: Each has an independent agency that advocates on behalf of people with disabilities. National Disability Rights Network: www.ndrn.org/ndrn-member- agencies.html or
(202) 408-9514.

Legal Aid Services: People who meet income eligibility requirements may be eligible for free legal services through a local office. There is no central list of every legal aid office in the country. An internet search can yield a list of local offices.