Wednesday, May 13, 2009

On Disability Prejudice

We will have guardianship over my uncle, who's developmentally disabled, when my grandparents pass away. He will live with us. My grandparents just obtained guardianship for themselves since that involves yearly investigations of their home (there's always some danger of losing custody based on the whims of the court and their ages and disability) and taking away some of my uncle's rights.

What scares me is that my grandparents' attorney made prima facie judgments about me, stating in casual conversation that my ability to be a guardian would be questioned, gesturing toward the mobility scooter in which I sat. He looked surprised in a negative way when he first saw me--those of you who are disabled know the look some people give when they didn't know you would be disabled, a look that goes beyond surprise--I felt and looked as if I'd been slapped. Ironically, this attorney specializes in guardianship cases for people with disabilities because of his own brother. Later, when I explained my disability, that I raise children, and my grandmother (who likes to brag as grandmothers do) stated what I've done for a living, he looked even more surprised. He later said he didn't think my guardianship would be a problem, but I am still concerned, furious, worried for me and other parents who have disabilities. Do single parents with disabilities routinely have their children taken away from them? Do people get turned down for adoptions or guardianship? After the toddler years, not as much physical caregiving is required and we already have to solve problems creatively to get home tasks done. While there's extra work to care for another person, it's not proportionally that much more over what we must do anyway. It's not as if we by any means live in squalor. I in fact took care of my children myself for a month when we were out of state just before I started researching the scooter. I had a lot of pain, but I did it. Keeping things simple and highly organized and planning ahead helps. If I were single, I would need some help from others, but that's available through friends, family, and other resources.

Why should I have to defend myself based on physical appearance? This is discrimination. Any parent or guardian has the responsibility to admit when they need assistance or cannot parent and there's no reason to prejudicially seek us out, especially when home visits are already required that give a window into his life.

My grandparents told me later they had not said anything about my physical disability. As my rheumatologist pointed out later, if someone who's blind can be governor of New York, why couldn't someone with a disability be a parent or guardian? I really can't think living with me would be worse than living in the state institutions, with a documented history of severe abuse against people with disabilities; there are almost no Medicaid waivers for group homes and this would be the alternative to living with me. I raise children and they're bright, happy, and well. Interdependence among all of us is key.

After the hearing, for the first time ever I heard my uncle express some wishfulness: "If I weren't retarded [his word], I could have got an education and done something." I told him that being a good person is far more important than an education, and that he is.

But yes, attorney, let's question the loving person with the mobility scooter because she's there (despite not being required to be), because obviously people with disabilities are so incompetent that they can't even get to the courthouse or feed themselves or dress up or articulate themselves, much less others or hold an advanced degree, ever work, raise children. Let's instead pretend that the state school where people are beaten, assaulted, neglected is a better or humane option. My grandparents looked relieved this weekend when I said that over my dead body would he not live with family. Members of their church, knowing he has money for retirement--which will cover basic needs if managed very carefully--have been hounding them in order to "help" and implying he has nowhere to go. They keep pressuring my grandparents about their plans and trying to tell them what to do.

Anger. I've just felt anger about this.


Full Tilt said...

Hi Frida---

This situation stinks (I'm being extra polite here)and yes, single people with disabilities can have their children taken away, etc, and yes, this is discrimination...

Perhaps you should do some research and find another attorney to advise of your rights in this situation...Who was the attorney???

I am so sorry for your pain today. I wish there was something I could do or say other than I have days like that and sometimes I just do what I can and go to bed...

Sending caring thoughts to you.

FridaWrites said...

I think it's not a bad idea to get a second attorney but we can't do so until we have jobs. He's just a local attorney, no big name but does have the specialty in guardianship.

Today's also a high pain day. Fortunately it's waning and waxing, not just waxing. Not much is getting done, which I don't like, but maybe I'll feel better soon.

yanub said...

What a jerk that attorney is. It is true that people with disabilities are often assumed to be incompetent to manage basic human activities, such as caring for another person. And that the attorney has a brother with a disability only means that this guy, like a lot of non-disabled parents and family members do, has come to associate the caretaking role he has assumed in regards to his brother with all people with disabilities. The thought that the brother might be able to manage somethings independently has not likely crossed his mind.

I hope you will be able to get your uncle into some educational program. Back when he was young, such things weren't available for people with intellectual disabilities, but I have seen more people with Down syndrome and various other disabilities even taking community college classes now. If he has the desire to learn, learning is possible.

I hope your pain is less, but I fear the spring weather is doing neither of us any favors in this regard. Here's to summer coming on and the barometric pressure stabilizing.

FridaWrites said...

He's been in some educational programs/community college classes--he enjoys art a lot. Primarily he's held a job for 29 years. Unfortunately we won't be able to drive him that far when he lives with us (over 3 hours per day), but we can help him find other work or other classes he wants to do.

It probably is all the barometric pressure changes!

FridaWrites said...

He wants to read/learn how to read and he has some--books on tape, LeapPad, phonics workbooks and tools. But he's very limited in what he can read and longs to do so--he keeps working at it but I think cognitive abilities do limit him in this regard. He loves art and people at his work have framed some of it and purchased art tools/supplies for him. My sister and I used to raid his ample art supplies as a kid! (with his permission)

Lisa Moon said...

Oh, GRRRR! I was even more outraged reading this post than the last!

I can *almost* find an excuse for the ignorance and rudeness of those parents making cruel remarks about you at the gym, but a lawyer who specialises in guardianship? I mean, is his head so far up his wealthy butt that he thinks any disability equals intellectual disability or something?!

I just can't fathom his incredible idiocy!

Then again, people often amaze me with their stupidity, I'm sorry to say.

Your BRAIN - the part which will be charged with making healthy and safe arrangements and decisions for your uncle - is clearly highly functioning in a way many wish theirs would (lol). So you use a scooter?!

I could understand if you needed to do lifts and transfers it might be an issue... but really.

And yes, as Full Tilt points out, people with disabilities have lost their children - all types of disabilities.

I'm hoping, too, that the barometer evens out for you and results in your pain following suit.

PS And your uncle has held a job for 29 years?! Whoa, there are many MANY non-disabled folks who can't say the same! That's quite an accomplishment!

FridaWrites said...

My favorite moment was watching his expression change:
Attorney: so, what's your dissertation on?
Me: x dry obscure area, with a disability studies component.

Sometimes it takes knowing someone on wheels for people to get rid of their biases. Hopefully, frida writes, there's a trickle-down effect.