Today, January 23rd, is a day that is being promoted as a day " to commemorate the lives lived by people with disabilities who were locked away, who ARE locked away from full participation in society. It was also established to remember those, our elders, who have worked tirelessly for inclusion and access, for the word 'all' to actually mean 'all'" (Dave Hingsburger). Here are my thoughts……
Ricki was lucky in many respects. She lived in an era past those of the big institution, the likes of which I once saw (shortly before their closing) in the early 1970's. But Ricki (and through her, I) were witness to part of the continuing struggle to let society realize that people with intellectual disabilities are PEOPLE, and can be valued and productive ones as well.
How numerous were the times that people addressed me rather than Ricki in asking questions that could have been directed to her……
How often did I witness people underestimating her due to the obvious fact that she had Down syndrome……
How often did people assume that I was a "saint" because I had Ricki? (I won't say she was always an easy teenager, but few teens are.) Sometimes when people stop me and try to console me by saying that "You did everything you could", do they realize that guilt is NOT my problem, but that I simply MISS her?!?
And one of the things I have felt most since Ricki's death is that I want her to be REMEMBERED, not just to be an entity that disappeared.
We accomplished what we did in the battle for Ricki's inclusion due to the work of many advocates before us. Today I salute them. And I try to comprehend that there is a huge population, of institutionalized adults, that no one remembers.
And I remember with sadness the terrible stain on mankind who agreed for era after era to shut away those who were different, less abled, and sometimes less productive.
The terrific prejudice and assumptions that follow those with disabilities still exists today. And to a large extent, isolation from the larger community is still very prevalent. And this is something we need to keep working at……
One of the battles we are still fighting for today is that of equality in medical services. Battles for the right to heart transplants, and other services for the intellectually disabled is not yet over. And this battle extends not only to those areas where there is a choice between "this" recipient, or "that" one, but even a general consideration that the lives of those with intellectual disabilities is one worth living.
Ricki was taking a psychiatric drug (Resperdal) for the last two years of her life. She needed the drug, without question, but it is a drug known to cause weight gain. Ricki had always been on the "full" side, but she was active, and we were working on curbing her eating. But with the Resperdal her weight ballooned. We asked the doctor is there was no other medicine appropriate for her, and she said "No. There IS a drug that acts in the same way, and doesn't cause weight gain, but the health fund almost never prescribes it, and it costs $200 a month." We asked her to apply for an exception for Ricki, but she refused. "They NEVER agree to cover the cost for those with intellectual disabilities; they assume that anyway they will be fat. It's a waste of time to apply."
So we went a different route: putting up the gate to block off the kitchen, checking that the school only gave her one portion at lunch, etc. If we had known that her weight would have lethal effects so quickly, we would have paid the monthly $200. I thought we had time. We would have fought the health fund without the doctor's help. But in my mind, the prejudice of the health fund helped kill my daughter.
That's interesting about the medication and the doctor not willing to try. I agree, I feel she is partially responsible.
Do you know the name of the alternative med? We have been struggling with the effects of Risperdal on my developmentally disabled sister's weight.
My heart broke when I read about the doctor and the medication. How dare they!! Thank you so much for writing this and for letting me link to it. I so appreciate it.
Ricki will be remembered - I never met her but I feel like I grew to care for her through your blog.
Oh, that is so awful, so sad. I agree, that prejudice still exists in so many other ways that affect our children. Have you spoken with that doctor again after? Is there anything that can be done for *others* that may need that medication in the future?
Heartbreaking...I am so sorry for your loss, and for the ignorance and prejudice you and your daughter had to deal with.
that's terrible that Rikki's Dr wouldn't consider the other drug. I expect it was Aripiprazole. The psychiatrist in our team uses it when folk get side effects on Risperidone. It is much more expensive but things are different here in the UK
I am so sorry that happened about the medication. That is exactly why the international day of memory and mourning is so important. Of course I never knew Ricki, but I am thinking of her, and you and your family today. I feel like crying. I also feel so determined to be part of the change that has to come.
Thank you all. The med is Abilify
Note that the doctor wanted to give it, but felt hopeless fighting the health fund
Becca, ideally I should make a stink and try to rectify the situation, but after years of fighting for inclusion, good education, etc., I simply have no strength for all of this right now.(I am involved in dealing with other pressing challenges in my life) (which do not get mentioned on this blog).
I remember Ricki and miss her with you. Even in this sad story you bring her to life. I am sorry that her life was thought "less" by anybody.
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