17 posts tagged “mental retardation”
My friend R had a baby on Saturday. As all newborns, the kid's as ugly as heck, but there's an instant love I guess most of us feel when we see a newborn that shocks me everytime. I'm always surprised I have that much love to feel, much less that much love for a person I just met.
R and I worked together for a company that provided services for adults with developmental disabilities. Last week R, our friend S, who also used to work for this company, and I hung out for a short time. It was nice, as we hadn't seen each other in a while, and we used to all be such good friends. (Because they are a part of a certain past of mine, it was a little weird, too, but that's another story.)
Anyway, the subject of children came up, of course, seeing as R was about to pop with this new kid, and her two year-old was making all sorts of commotion, quite glad to be the center of the attention of three women. R and S both began to talk about their fears regarding their own current and future children, and having a child with developmental disabilities was expressed as their top fear. I sat there quietly, feeling as if I had been kicked in the throat.
My first response was to feel hurt. I felt as if they were saying, "I don't want a retarded kid." This assumption of mine confused me because R and S feel the way I do about people with developmental disabilities not being any less or more human than anyone else and as having the same rights and responsibilities as anyone else. I have seen them fight passionately for their clients and friends with developmental disabilities, facing up to doctors and strangers, alike who barely see such people as human beings. I felt as if they were behaving hypocritically in their fears.
However, I began to think about what they were saying, and I think what they were saying, is not, "I don't want a retarded kid", (of course, they wouldn't say that) but "I don't want my kid to have mental retardation."- the difference being, it's not the kid they don't want, it's that they don't want him to have to go through what people with developmental disabilities go through.
Yes, there are many things that are hard for those with developmental disabilities. But more than that, more than the disabilities of mental retardation, etc, are the handicaps given to them by society. We handicap those with developmental disabilities more than their disabilities ever could. We are prejudice, we make assumptions about what people can and can't do, we exclude, we ignore people's rights, and even attempt to deny them personhood. My two friends and I look beyond the childhood of those with developmental disabilities. We know what happens to them when they grow up, at least in our state. We know there is a shortage of services. A shortage of community involvement. Who does want her kid to go through all of that? I see that that is a valid fear.
However, for myself, I don't think that my child having developmental disabilities would be my biggest fear for him or her. First of all, I imagine that my child would be human. Therefore, as such, my child will have struggles in this life. I don't want him/her to struggle or hurt. But struggle and hurt are guaranteed for all of us. A developmental disability is just one example of the many, many struggles that exist in our fallen world, and it is not the worst one to have. My kid may have disabilities, for example, as my sister's kid may have addictions, or my friend's kid may get cancer. As far as societal handicaps, and not to make light of what is real prejudice, we all get kicked around by this world; look at who its ruler is.
I think some of my bigger fears are not that my kid would have struggles, but that I would not give my child the tools to cope with whatever struggles s/he would be allowed to have by the Creator. I fear that I wouldn't teach my kid that whatever his/her struggles may be, they do not define who s/he is; his/her identity would be in Christ. I fear not teaching my child character. I fear not giving him/her enough love, and not teaching him/her about the love of God.
I wish I would have entered into the discussion with my friends instead of sitting there quietly and passively, judging them for their honest fears. I think it was an important conversation. Well, an interesting one, anyway.
Those are my feelings and thoughts about these things now. Of course I'm not a mom and don't know that I ever will be. I do know that regardless of how my friend R feels about the possibility of having a kid with developmental disabilities, if this new baby were to turn out to have one, I know she would fight passionately for the best for her.
This is an update on Burt from For When You Have an Extra 24 Minutes and 50 Seconds.
The end of the institutional era for Hoosiers with severe developmental disabilities.
This is a terrific step. Long term institutionalization is not a normal way of living life. It involves living separated from the community. Living in a class system of 'staff' vs 'patient' or 'resident'. Subject to abuse and neglect due to a variety of variables.
But it is just a step. Good job, Indiana! But it's not over. 7 people have died since they've been moved, died, and some of those could have been prevented. People still need care and support. Don't mess it up.
Indiana, welcome your new neighbors. They'll act differently than you, for they've lived in a different social system. A few will have some behavioral issues they need to work out. Be patient. Give them time. Frankly, they've every right to live next door to you.
Workers and caregivers, communicate with each other, with doctors, with families, and most importantly with those whom you are serving, for it was lack of such that probably led to the death of some of the 7. Train those you are providing services to on community living. Don't leave your new clients helpless in their new world, fearful, behaviorally acting out, and depending on 'the kindness of strangers'.
Keep people receiving your services involved in their community. For it is visibility that will break stereotypes. Teach them of their rights and responsibilities that come with living in the community. The community will be watching you interact with your clients. If you are patronizing or easily frustrated they will be, too. But if you are patient and respectful, they will learn to be that also.
This is a key, key time. Times are changing. If people truly are going to have their right to live in the community recognized, it's going to take effort. Don't slack off. Don't make living in an institution a better alternative than living in the community.
Surgery broke the law @ CNN.com
Writing on their blog, her parents said,
"Washington law specifically prohibits the sterilization of minors with developmental disabilities without zealous advocacy on their behalf and court approval," said Mark Stroh, WPAS executive director, in a statement."I absolutely agree this procedure should have been reviewed by a court," said medical bioethicist Arthur Caplan. "There was not enough due process to look out for the young girl's rights, so I think that was a severe failure in deciding to do this procedure."
Some disability rights advocates say they believe the Ashley case sends a clear message about the rights of the disabled.
"The implementation of the 'Ashley treatment' raises serious concerns about the continuing discrimination faced by people with disabilities -- discrimination which is often based in stereotypes about their potential and value as individuals," Stroh said.
Disabilities attorney Stephen Rosenbaum agrees. "I have a lot of compassion for this family. And I'm not here to shoot darts at them," he told CNN's Paula Zahn. "But they should know that Ashley has a right to develop as a human being."
It also had been stated in previous articles that Ashley was getting too heavy for her grandmother and other family members to pick her up. This article also states that Ashley is afraid of blood, so they didn't want to traumatize her with menstruation."Ashley's smaller and lighter size makes it more possible to include her in the typical family life and activities that provide her with needed comfort, closeness, security and love: meal time, car trips, touch, snuggles, etc."
So, radical surgery was their answer. No fighting for church and community support? No home health aides to come into Ashley's home and assist the family with her care? No acquiring mechanical lifts that are available to transfer an adult from her bed to her chair to the shower, etc. No learning safe transfer techniques that exist already without the use of expensive mechanical lifts. No trying to find ways to help Ashley deal with her normal fears of blood and menstruation. Radical, invasive surgery was their answer.
My fears for Ashley are that with her small size, she will be even more vulnerable to abuse. If she were allowed to grow to her rightful size, she would not be seen as prey as easily as a woman who looks like a child, and she would not be as physically hurt if someone were to harm her.
In addition, I fear her she will ever be spoken to as a child, handled like a child, and thought of as 'less than', because often that is how we think of children. Spoken to and handled as a child for a teenager and adult is not only undigniying, it affects how the person treated as such sees him/herself. Perhaps Ashley will always see herself as a child and accept the lie that she is different than other people.
Perhaps she won't. Perhaps she'll have that feeling inside her that many of the people with profound cognitive and physical disabilities that I have known will have, the feeling of the truth that she is not 'different than', and that she wants to grow and change, like every human being. Then because she will may not have the cognitive awareness to know exactly what that truth means or the communication skills to express that truth, she may communicate her frustration in 'behaviors', such as noncompliance with caregivers, mood swings, and aggression toward herself or others, if she is able. This will result in psychotropic medication, and a Pandora's box of psychiatric treatment.
Are we as the Body going to leave people like Ashley to fight for their own dignity via their 'behaviors', or are we going to step up, and recognize their dignity and personhood and worth soley based on the truth that they are fellow image bearers of Christ?
This is Doris. I worked with her toward the end of her life. She reached her early 70's, quite a feat for a person with Down Syndrome. Without much thought we treated her as we would have any fearful and fragile senior citizen. Spoke to her gently. Helped her to her rocking chair in the living room every evening, put a shawl on her when she shivered. Of all the residents in the group home where she lived, we, both staff and residents alike, were the most respectful of Doris simply because she was older. It's a natural thing to do with the elderly. The oldest in the room gets the most respect. The fact that she had profound mental retardation didn't come into play in the respecting of our elder Doris.
But what if she didn't look as old, if she were 70 but with a strange look (and she would look strange) of a child, how would we have treated her then? Would we still have respected her 70 some odd years of life, able to see the evidence of her years clearly in her normally developed body?
If people with disabilities are to be included in all aspects of society,
and if they're to be respected and valued as our fellow citizens, we must
stop 'treatments' that keep them vulnerable and different.
Update 6/18/07:
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Here is a video (right) of a man being interviewed. The video is long, so, I've also included the preview (left) so you can decide for yourself if this is something you want to sit through for 24 minutes and 50 seconds. It was difficult for me because of my short attention span, but it was worth it.
I've shared some of my thoughts before about the idea of adults with developmental disabilities being considered 'child-like', 'having the mind of a child', and how misleading the term 'mental age' is. Honestly, before I got to know people with developmental disabilities, that was my view, also. But, this is such an ignorant and demeaning idea. Here in this video is what I mean.
This man, Burt, is 79 years old. That's 79 years of life experience, and look at what he's experienced for heaven's sake- institutionalization, abuse, abandonment, love, marriage, joy, music, and the same national historical events that every man his age was affected by. Do we not think that he, and his wife, for that matter, though she may not be able to express herself as well, have acquired 79 years worth of wisdom in this life time?
And, yet, we dismiss people like Burt and his wife, Barbara, by forever referring to them as kids or to them and their lives as 'cute' or novel or also differing them from us by seeing Burt and Barbara as 'angels on Earth'. Some of us may think their lives were tragic or pathetic. And some of us even may look at them in this video and think, "What a waste of taxpayers money."
However, Burt wisely reflects on his life for himself at the very end of this video: "It was good while it lasted. We did so many good things."
Okay, my self-righteous commentary aside, enjoy the video... if you have an extra 24 minutes and 50 seconds, that is. [See, I have to give my opinions here. People tired of my ideas in real life really fast. Just kidding... sort of :) ]
The man who has the blog I have mentioned a few times on here, Disabled Christianity, and who helps lead a Sunday school class for adults with and without developmental disabilities has a video out about his class.
I worked for a while for a company that ran several group homes for adults with developmental disabilities. When we attempted to open one of our homes, once, we were met with similar opposition as the folks in this video. Our residents were slandered. They were considered a 'danger to the neighborhood children'. Sexual predators, they were called. (How they got that people with developmental disabilities were sexual predators, I'll never guess.)
The neighbors contended they were bad for property values- laughable, considering our houses were brand new, more expensive houses and the neighborhood, though fairly nice, was old and in a bad area of town.
They came up with all sorts of tired, old stereotypes. It was painful. It wasn't as if the neighbors didn't know anything about developmental disabilities or anyone with them, either; our company already had a couple of home in that same neighborhood. Many of the neighbors protesting were the ones who said hi to our folks on our evening walks. They knew our folks. They knew the things they were saying about them weren't true. I'll never understand why they did what they did.
Long story, but the opposition won in our case. So, I really appreciate this video. (You'll probably have to watch it on YouTube. The owner doesn't alow embedding.)
UPDATE:
I have found a video.
She is the same person who did In My Language.
All the hoopla about what's-her-face using the word f****t. It's such an evil word, really. Unlike the term homosexual which describes a person's current same-sex attractions, the word is used to hate the person with same-sex attractions.
Oh, and there's a bunch of fun other words, like the 'b' word for women, for instance, as well as all the hate-filled ways we refer to Jews, Hispanics, Aisians, and on and on and on.
Vox blogger Emancipator, referring to the vile word that begins with an 'n', stated that it is not a word, but a created image. That's just it, really. The word is an ingrained image in our head of what people of a certain race should be and can only be, as 'less than', as sub-human.
Think then about the word 'cripple' for those with physical disabilities. Doesn't an image of a burdoness beggar come to mind?
What about the way we use 'crazy'? Nut job? Looney?
When we say, 'that Anna Nicole Smith, she was one crazy lady'... What do we even mean? Do we mean her actions were smptomatic of mental illness and because of that mental illness she is worthy of judgment? No, I think we mean many of her actions were bizarre and immoral, so why do we use the word crazy? Because we still think the symptoms of mental illness are bizarre and immoral, and therefore so are the people who suffer from it.
Although they sometimes embrace the word 'crazy' in an attempt to own the hurtful word, in general people with mental illness don't like to be called crazy. Because of the created image of crazy.
People with mental retardation don't embrace the word retard. Ever. It's hurtful to them. Some of the older people I've know with mental retardation may refer themselves as 'retarded' in the clinical sense, and may even use it as an identity. I wish they wouldn't use it as an identity, but as some people choose to use their sexual orientation as their identity, it's their perogative. But I digress.
My point is, no one ever uses the word 'retard' in an affectionate way.
For those with mental retardation, it's a word that's been used to label them their entire lives. They may or may not cognitively understand the dictionary or medical definition of the words 'retard' or 'retarded', but they know what it means when people call them that. It means the person using the word hates them. Doesn't think they are as good as s/he is. It means that the person using the word 'retard' is separating him/herself from the person with mental retardation, calling him 'different', 'less than', 'sub-human'.
So, every couple of decades or so, probably in attempt to be more PC, those who care about people with metnal retardation have the clinical terms changed. From feebleminded and moron to retarded to mental retardation (still technically today's medical term) to developmentaly disabled (a more politically correct umbrella term which includes a viariety of disabilities, not just mental retardation) and the brand new one, which I personally happen to hate, intellectual disability.
But I fear society is always going to take those clinical definitions, as now we do with 'retard' and 'retarded', and throw them back at those with mental retardation, using them to clearly define them as different, scary, and worthy of being hated. Actually hated. And to draw the line of separation.
We may not throw it at the actual person, though every person with mental retardation has heard the word 'retard'. What we do is use it in our everday language to describe things that are comical or ridiculous or things we hate. Just as how many of us may feel about those with mental retardation. We've done it with the old terms like idiot, moron, and so on. Now, we do it with the words retarded and retard. My brother calls his dog a retard. Friends, good people as they are, use the word retarded to describe ideas or a lousy meal.
If we had a choice to be thought of as rich or retarded, as selfish or stupid, how many of us would choose rich and selfish over retarded and stupid? Why are we, me included, afraid of not being as intelligent as other people, when there so many other gifts people have other than intelligence? There are, come to think of it, so many other kinds of intelligences other than 'book smarts'.
But what if a person is just not smart at all? If s/he has no common sense, does everything wrong or cannot do anything at all. Has no gifts (although I have yet to meet such a person). As Martin Luther King saw things, shouldn't we all want to be judged by character, not our abilities, race, or gender? For we can control our character.
I have totally rambled on. I am challenging myself not to go back and correct spelling, grammer, structure. I don't want to appear smart. I want to appear of good character.
Those who can speak up and say, 'do not call me f****t, n****r, or b***h' do stand up and should do so. There should be hoopla when people use words like f****t. They've not always been allowed to, but most people who've been hated with words have had the ability to stand up for themselves, did so, and eventually they were heard. Or at least they are being heard.
Those with mental illness or mental retardation not only haven't been allowed to stand up for themselves but many of us have never even been able to. People have had to do it for us. Hence my challange on behalf of those who have mental illnes or mental retardation:
As you would never use the word f****t, n****r, or b***h, do not use the words 'retard' or 'retarded' or 'crazy'. That's it. Use them in their literal sense, perhaps, (retard means to slow down, etc.), but don't use them at people. Don't use them to describe ideas or a lousy meal or whatever. DON'T use them.
What is one of your favorite poems?
Submitted by marvel is my pen name.Equality
by Maya AngelouYou declare you see me dimly
through a glass which will not shine,
though I stand before you boldly,
trim in rank and marking time.
You do own to hear me faintly
as a whisper out of range,
while my drums beat out the message
and the rhythms never change.
Equality, and I will be free.
Equality, and I will be free.You announce my ways are wanton,
that I fly from man to man,
but if I'm just a shadow to you,
could you ever understand ?We have lived a painful history,
we know the shameful past,
but I keep on marching forward,
and you keep on coming last.
Equality, and I will be free.
Equality, and I will be free.Take the blinders from your vision,
take the padding from your ears,
and confess you've heard me crying,
and admit you've seen my tears.Hear the tempo so compelling,
hear the blood throb in my veins.
Yes, my drums are beating nightly,
and the rhythms never change.Equality, and I will be free.
Equality, and I will be free.
Of course this poem is meant to be about the African American experience, and I love it in that context. But I first read this poem after coming accross soem of these pictures, and it was as if the poem could have been written to describe the unknown, shameful history of the treatment of those with mental disabilities in the US. The world, really.
