Monthly Archives: November 2012

No Place Like Home: The Complicated Phenomenon of Group Homes and Respite Care

Hello, readers,

This is going to be a tricky post for me to write, as I very much want to write it representing all sides fairly and not dishonoring anyone. I may or may not succeed, and if you think I do not, please feel free to comment and explain–politely and logically–what you think I missed.

Last night, I experienced some of the most powerful emotions connected to disability and advocacy that I have in a long time. I got that “heartburn” sensation I feel when someone makes me angry because of their perception of people with disabilities, or the way they choose to approach or react to disability. Actually, let me nix that. I’m not sure where that heartburn-like sensation came from, because last night, my heart broke for someone. Over and over, in fact.

I suppose you’re all wondering what in the world caused this, so I will tell you. I’ve been reading Carly’s Voice, a memoir of Carly Fleischmann, written by Carly and her father, Arthur. If you remember, Carly is the teenager with autism I wrote about a few months ago, who astonished her family, friends, and others when she unexpectedly began typing to communicate her wants, needs, feelings, and perceptions. Suddenly, this girl who had been labeled “mildly mentally retarded,” whose own parents believed–because they had observed her autism-driven mannerisms–that she couldn’t understand much of anything, was revealed to be intelligent, funny, self-aware, and very creative. In other words, through her typing and expressing how she felt about autism and other matters, as well as explaining how autism affected her and others, she is helping prove that disability really is a natural way to live.

The main issue that Carly and her parents face, though, is the “gap” between the internal and external Carly, as her dad describes it. You need to understand that even though she has all these wonderful strengths, Carly still battles what the ableist world likes to call “behaviors.” She will, for example, throw herself on the floor or bang her head, or pull things out of cabinets or off shelves. She has never gotten a full 8-9 hours of sleep a night, usually waking up, engaging in chaotic behavior, and needing to be put back to bed.

Carly, however, has explained these “behaviors” through her typing, although it did take awhile for her to be persuaded to talk about them. (Maybe it was hard for her to put her finger on why the behaviors existed at first, or maybe she was just reluctant to talk about them; I sure would be. Nobody likes to talk about what people perceive as their flaws). She explained that autism often feels like “my legs are on fire” or like “there are thousands of ants crawling up my arms.” “Behaviors” are a way to deal with those sensations. Medication helps, but only so much. Carly has also written that she tries very hard to control her impulses in public, but that it is extremely hard for her to do. I suppose if I constantly felt like my legs were burning up and my arms were filled with insects, I’d jump around, bang my head–do anything to get the sensations to lessen or go away.

Now, this is where the effect on my heart comes in. Before Carly began typing, her autism and the mannerisms that went with it made life extremely difficult for her family, to the point that she was placed in respite care. In Carly’s hometown of Toronto, Canada, and in her specific case, “respite care” essentially means living at a group home full- or part-time to give the families of the person with a disability a “break.” Now, I am not for one second arguing the idea that Carly’s family needed a break. Arthur Fleischmann’s descriptions of dealing with his daughter’s constant “swirl of energy” are gut-wrenching and would exhaust a person just reading them. But there are, as I see it, two problems with the respite care scenario.

One, respite care, and group homes, often place families in a terrible position. Arthur Fleischmann writes of trying to find proper respite care for Carly during their first go-round. She was placed in a home known as Caring Friends (I often find names like this sickeningly ironic). Caring Friends was described as a dreary house, with broken bulbs, shabby furniture, and walls marred with the scars and dents put there by residents who exhibited autism “behaviors.” The place was also described as having “the sounds of autism…a zoo.” Carly’s parents, heartbroken but unsure what else to do in order to keep their family life sane, would leave her at Caring Friends over the weekend, from Friday to Sunday, and then come to take her home on Sunday, where she would continue homeschooling, therapy, and other “work,” as Fleischmann called it, related to autism. Once, Carly’s dad walked into Caring Friends to find that Carly was wearing the same clothes he had dropped her off in, and that she “reeked,” having had at least one toileting accident. The explanation he received was that the staff member who was supposed to be with Carly was gone for the day–so she was left to soil herself and wear dirty clothes (?!?!) Carly was removed from Caring Friends, but that put her family back on square one.

Now, if all this had stopped happening after Carly began typing, my heart would not have experienced what it did. But here’s the second problem. Canada has a socialized health care system (we’re not getting into the politics of that, but I will say it makes things worse for families like Carly’s). Carly’s parents had to fight for a lot of the services she received, and even after she began typing, they placed her in another respite care facility, Cedarview, to continue to receive services to “work on” her “behaviors.”

Eventually, Carly began typing about Cedarview. Repeatedly, she requested that her parents allow her to come home, and/or live at home. Arthur describes some of the conversations he had with her about this as heartbreaking. He describes some of the things she said to her mother Tammy, such as, “I am going to Cedarview…I will work hard so I can stay with you.” Carly began to report that the therapists at Cedarview made her feel “stupid,” especially when they gave her rewards of Lay’s potato chips for typing. (“It’s like, spell “chips” for a chip”). “I’m not a trained dog,” she wrote once. Carly also expressed the idea, though not in these exact words, that she was being sent away as punishment. Tammy and Arthur denied this, and I believe them. But Carly kept typing things such as, “I get it…you don’t want me [here].” And really, I can’t blame her for feeling that way.

During Carly’s stay at Cedarview, she also alleged abuse by a staff member. Her parents’ gut reactions made me angry, because they questioned whether she could be lying or manipulating the truth. Granted, Carly had done that before–she’s very smart, and she “learned the art of guilt and manipulation,” so I’m not saying her parents were off base. I might have said the same things they did. But Arthur also wrote that Carly used making up things, and her vivid imagination, to counteract the boredom she underwent at Cedarview. (Yes, the abuse allegation was discovered to be true, and Carly was removed). Carly wrote that “it makes me sad” to be with the other kids at Cedarview because they had severe autism and did not communicate; she could not connect with those kids. As a teenager, she was sent on field trips with seven-year-olds, because of “behaviors.” When she expressed a desire to attend mainstream school, she was told, by her parents, that her outbursts would be “too distracting” for the other kids and that she was “not ready.”

Now, do I understand all this? Yes. A severe disability can impact family life like mild or moderate ones often do not. And in a country like Canada, where services are limited, as are choices, sometimes “respite care” has to be considered. Do I believe Carly’s parents love her and wanted her at home with them full-time? Absolutely, yes. Do I understand why a parent would question a serious allegation if a child had been known to tell fibs or manipulate before? Sure. Would I do it, too? Yes. But I have several problems with the idea of respite care and group homes, as they relate to Carly specifically, and other people with disabilities in general.

Some of this, I’ve already gone over, such as the “not ready” thing–the idea that life is not a dress rehearsal, that “ready” is relative, and that people with disabilities should not be indefinitely held back because of what someone else says “ready” means. Or the idea that group homes should be a last resort, often because of the abuse and neglect that occur in them. But bear with me, because some of this is new.

First of all, let’s go over the most basic problem with this story: Carly has autism. BUT she is also a brilliant, creative young woman who just happens to “behave” in different ways. And, as she said to her parents, she tries very hard to control those behaviors. In fact, a few anecdotes in the book describe her progress with this–and it is significant. So (a), what matters more here, strengths or weaknesses? It sounds like weaknesses are being allowed to win in this one area, despite Carly’s parents’ efforts to fight for her and make sure that just because of autism, she was not given “less.” And (b), were Carly’s efforts to control her behaviors, and progress doing so, not revealing anything? I’ll be frank: I’m tired of seeing disabilities tear families apart, and I’m tired of residential facilities of any kind playing a role in that. If a child repeatedly asks to live at home with her family, and has shown she is able to do that, why can’t it happen? If the child’s siblings are protesting that their sister has been sent away because of autism (as Carly’s siblings Matthew and Taryn said), why are the parents not listening? I don’t know about you, but when a child writes something like, “You want me to behave like Taryn, but I can’t”–that’s a huge red flag. That tells me, especially in a socialized health system, it may be time to think about ditching “services” and treating disability as natural. And the natural place for a child is with her family, not in an institution, even part-time.

Another problem is that, despite loving families and despite good intentions, group homes and respite care often feel like discipline or punishment. As in, “You can’t do X or behave like Y, so you can’t stay in our house; you have to stay here, where everything revolves around disability.” Often, especially in places where government funding is low and the system is socialized, these “homes” are not homes at all. Their aesthetics, if existent, are “dreary,” as Arthur put it. The kids are isolated, and maybe abused or neglected. Most of the kids’ days are spent doing therapeutic things so they can “get better.” (Never mind the fact that some disabilities are incurable–and that’s okay). You cannot look at something like that, and not see where a feeling of being punished would exist.

Finally, placing a person with a disability in a group home or respite care often results in that person thinking they need to be “fixed.” Carly repeatedly asked her parents, and others, to “fix me…fix my brain…my brain is silly.” Her parents, in all sincerity, responded with, “You don’t need fixing.” But what does respite care essentially say? Even after the abuse at Cedarview, Carly’s parents were ready to place her in respite again (having tried to open their own group home and finding nothing but red tape). Carly did eventually begin staying in a real home with a woman named Darlene who helped her with “behaviors” part-time, but she still wasn’t with her family, and the idea that she needed “fixing” persisted.

I haven’t finished Carly’s book yet. I have a hunch that she will get a happy ending. But many, many others placed in group homes and respite care do not, because of what I have described here. I exhort anyone with a loved one who has a disability and is reading this: unless you absolutely cannot help it, do not put yourself in the positions of Carly and her family. Don’t let disability make your family function as separate units. Instead, treat disability as natural, as much as you can, and allow your loved one to have a real home.

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We the People (with Disabilities): Why are Our Votes on These People’s Ballots?

Hello again, readers,

 

*WARNING*: This is a politically-driven post that is unfavorable toward the Democratic Party. If you cannot handle reading anything that is unfavorable toward this party, or the Republican Party, please cease reading now. You were warned. Any vitriolic, curse-ridden comments directed at the fact that the Democratic Party was taken to task in this post, will be deleted.

It’s your favorite Chick again, obviously making up for lost time.

Like many other people, I have my own set of little quirks. One of these is that when I get nervous, excited, or angry, I develop very red, itchy skin. Medically speaking, I guess it’s a form of rosacea. But we’re not dealing with scientific reasons today, so I’ll just call it what it is at the core: an emotional reaction. And I had it tonight. I think I’m allergic to something–or rather, someone. A lot of someones. I’m allergic to Democrats.

Yeah, you heard right. At this moment, I am ALLERGIC to DEMOCRATS.

Now, I know what you’re gonna say. “You claim to be a Christian; aren’t you supposed to love everyone?” Yes, I do claim this. Yes, I am supposed to. And yes, I do, as best I can. But as Jesus Himself would be the first to tell you, loving someone doesn’t mean you agree with everything they do or let them get away with doing wrong. And “wrong” is exactly what the people I’m going to talk about have done. Also, this is not a religiously-driven post, so actually, that argument is secondary to the point.

And you might also say, “Hold up; the election’s over. You’re just mad your candidate lost.” Well, yes it is, but no, I’m not. I was taught never to be a sore loser, and I live by that. The reason I’m writing about this now is because the story just hit the Internet. It’s a late story. And that tells me the media may be trying to cover up something we needed to know a long, long time ago. (Not really a shock, is it)?

So what is the story? Well, it makes me furious to even think about it, but here I go.

On newsmax.com, there appears this story, by David Horowitz. Mr. Horowitz is founder and president of Students for Academic Freedom, and the David Horowitz Freedom Center, Los Angeles, CA. He also has a brother-in-law named Henry. Henry is chronologically in his 40s. Mentally, he is six years old and has “lived most of his life in a home for the disabled.” Over Thanskgiving, David was shocked to hear Henry say,

“Obama saved me.”

Naturally, David asked what Henry meant, and was told the people at the home who “took care of” him filled out his papers, told him how Obama cared for him, “taught him the Obama chants,” and then took him to vote. “They did the same for [everyone else] in their care, approximately 60 in all.”

What. The. Flipping. HECK!!!!!????!!!!

There are so many things wrong with this scenario I scarcely know where to begin. But let’s break it down:

  1. I don’t care if you have an IQ of 20. Nobody, but nobody, has the right to tell another person how to vote. Americans came to this country to escape and avoid that kind of treatment. And nobody has the right to stand over your shoulder, fill out your papers for you, and make sure you vote the right way.
  2. To tell a person how to vote is to manipualte and extort them. Wait a minute–manipulation and extortion–isn’t that the same thing we accuse people with disabilities of doing all the time? While, out of the other sides of our mouths, claiming that they’re too stupid to know what’s best for them? Which reminds me…
  3. This entire scenario assumes that Henry was too stupid to know who he should vote for or what he wanted. Now, I understand that if a man has the mental age of 6, it can be difficult to explain what voting really means. And I hear my audience: “You wouldn’t let a six-year-old vote, would you?” No, I wouldn’t–if that were a chronological six-year-old. But as we have discussed on this blog, there is a major difference between chronological age–which should come first–and the “mental age” someone is given based on assessments that often don’t apply to the whole person. Chronologically, Henry is in his 40s, and that’s how he should be treated. Chronologically, he is plenty old enough to vote. So why hadn’t someone taken the time to explain the process and the meaning behind voting, in a way he could understand, instead of assuming, “He can’t understand because mentally, he’s 6?” If we stopped assuming “can’t,” I’d venture to say the lives of people with disabilities would be a lot better.
  4. These “keepers” (that’s the word Horowitz used, and I despise it. We call the people who take care of ANIMALS “keepers”), cast Henry’s vote for him. He was denied a voice. Instead, the “keepers” got to use him to project their own voice–and then do it again, at least 59 times over. You tell me that’s not pushing a manipulative agenda. People with disabilities need to, instead, be taught that they are “we the people” as much as any of us, and they should be allowed to say, “We the people WILL NOT SHUT UP!”
  5. Now we get to the nitty-gritty–the candidate Henry was in effect forced to vote for. Now, if Romney or any other candidate had been on the other end of that ballot, I’d be just as enraged–probably more so since that’s a representative of my party. (Which I chose, by the way, and thank God for the opportunity to choose). But Barack Obama is not the representative of minorities–including people with disabilities–that he would have us believe. He is guilty of blatantly lying to the American people in a number of cases (the real cause of the Benghazi attack, and the fact that it was “an act of terror,” for example). He and his fellow politicians push their own agenda out of a belief that America will blindly follow orders (“We have to pass the health care bill before you know what’s in it.”) He has sent America into a black spiral of debt, which my grandkids will have to pay through the nose for, and claims it’s all in the name of the common good. He has said, in effect, that Republicans want the elderly to die, for people with Down’s Syndrome and autism to “fend for themselves,” and for us all to suffer the ill effects of dirty water and air. And let’s not forget the infamous, “You didn’t build that” quote.

This man, and his party, are pro-death. The death of small businesses. The death of success. The death of people who have no voice (this is a pro-abortion party and a pro-euthanasia party). The death of existence as a person (it is my firm belief that this country’s current paradigm that “gender is a choice” is a subtle, relativist way to stamp out true masculinity and femininity, and make us ashamed to be defined as created men and women). The death of the “hope and change” that spilled from Barack Obama’s mouth in 2008. The more people on government assistance–including those with disabilities–the better HE looks. Handouts are good; hard work is bad. In fact, evil. And most of all, Barack Obama is the proponent of the deaths of INDEPENDENCE, DIGNITY, LIBERTY, EQUALITY, AND THE PURSUIT OF HAPPINESS.

How do you know Obama is killing dignity? Well, look at Henry and others like him. But–listen to me here–it is not only his fault. The people have choices, and we are misusing the power of choice, particularly if we allow stories like Henry’s to continue happening.

Am I saying we should hurt Obama and his Cabinet in any way? No–that would be against biblical principles. Am I saying he should be turned out of office? I’d like nothing better, but I don’t see it happening. What I am saying is, he and his fellow politicians are making exploitation and manipulation of the very people they claim to care most about, possible. I mean, the man uses CHANTS to get his point across, including the creepy song “Mom and Dad, We’re Blaming You” that ran in this year’s election ad campaign. I know of several other people who used chants and emotion-driven, anger-driven propaganda–and none of what they did was for the greater good. It was for no one’s good but their own.

So, what am I saying about people with disabilities and the voting process? Let me sum it up:

1. Stop assuming “can’t.” Chronological age trumps mental age. If your loved one or colleague or friend even shows a shred of competency in any form, explain the process to him or her in a way that can be understood–and let them cast a vote themselves.

2. If there is NO WAY UNDER THE SUN this person can vote? First, make sure you know 100% that this is true. But if it is? Then that person doesn’t vote. It does NOT give you a license to cast a vote for him or her. In this country, that’s called fraud.

3. People with disabilities need to know and understand the civic process early on, if at all possible. And then they should be allowed to use it.

It’s time for all people with disabilities to look at the ableist world and say:

GET YOUR HANDS OFF MY BALLOT AND GET YOUR OWN VOTE!

Giving Thanks for the Right Things: Integrating Disability into the Spirit of Thanksgiving

Hello, readers,

Yes, I disappeared for awhile. Between the demands of a second Master’s degree and the recent news that I am getting a book published in the spring, I have been one busy lady, writing papers, doing edits, and writing a discussion guide for the book, among many other tasks. But this blog was not far from my mind, and now I intend to attempt a more regular routine with it.

Today’s post, as you can tell, concerns Thanksgiving. I hope everyone has had a good one, and that the trytophan and other after-effects of the bird and its table compatriots have worn off. And I hope that in the midst of yesterday’s Black Friday chaos, everyone still found time to think over the things they had to be grateful for. And of course, it occurs to me: what does that look like for people with disabilities and their families? So I wanted to write a post about that, addressing some of the misconceptions about thankfulness and disability, and hopefully showing what people with disabilities and their families can really be thankful for this season. So, here we go…

Misconception #1: People with Disabilities Should be Grateful all the Time

This is a relative of “people with disabilities are, or should be, perpetually happy” (see the August archives, the post on “good labels.”) This misconception basically works on the idea that people with disabilities are so enthralled by the ability to do the simplest things that they never have any reason to feel anything but joyously thankful for any crumb life throws at them. For example, sometimes people wonder why people with disabilities push so hard for independence and access in our world–they should be grateful we let them live and move in the outside world at all. WRONG, WRONG, WRONG. Now, I understand that there is virtue in being grateful for the small things in life, and I extol that. But if you make it into a Pollyanna-esque attitude, and if you expect people whose lives “the system” routinely makes difficult to be over-the-top thankful for, say, the one accessible entrance in his or her neighborhood, then that’s just phony.

A relative of this misconception is:

Misconception #2: People with Disabilities are Never Thankful for Anything

This is a relative of the stereotype that says we’re all angry people with chips on our shoulders because of something we were born with and can’t “fix.” No, no, NO. The truth is that, just like everybody else, people with disabilities have things they’re honestly thankful for every day. They have things that can go either way–as in, one day you like your job or your school, and the next day, you really, really hate it. And they have things that they may never be thankful for, such as, let’s say. Brussels sprouts. Gasp–they may never be thankful for therapy and doctor appointments! (And doesn’t THAT fly in the face of how society expects people with disabilities to act? I love it). Yes, we’re thankful and grateful. It just may not be for what people expect us to feel those emotions toward. Because as we’ve discussed, when people with disabilities don’t do or say what society expects of “normal” people, the “normals” get really scared. *Evil laugh here*.

Misconception #3: The Families of People with Disabilities Should Encourage the Attitude, “It Could be Worse”

Now, in theory, this is one I get. There is always someone, somewhere, who is worse off than you are. And yes, because of the varying degrees of disability, a person with a disability can be honestly thankful his or hers is not “worse” than the next guy’s. In fact, the sad truth is, society and the media encourage this attitude, mostly by showcasing the most severe, debilitating disabilities in movies or on television. It’s like they want us to walk away with one takeaway message: “Thank God that’s not me!” And that makes me sick.

And yes, one of the things families of people with disabilities should be thankful for is the things their loved ones can do, or is strogn in. There is nothing wrong with that. The problem comes in when, as often happens, people use the “it could be worse” construct to reinforce the disability hierarchy (being Deaf is not as bad as having CP, which is not as bad as Fragile X, which is not as bad as…) It’s also a problem when the “it could be worse” attitude gets consciously or unconsciously shoved down the person with a disability’s throat, as in, “Stop complaining about going to therapy! You should be grateful these people take time to help you!”

Misconception #4: A Person with a Disability will Always be Thankful for the Same Things you Are

Yeah, this likes a case of “duh!” But bear with me here. This one has actually happened to me, and I’d venture to say it happens to others. As in, let’s say you have a child or young adult in your house who, like me, is intelligent but has poor motor skills. You might be thankful beyond words that this year, that child or young adult has mastered some simple skill like writing her name. But let’s say she’s thankful she got A’s in a tough subject, or got to take riding lessons this year. You see where I’m going, don’t you? Right–if you focus too much on being thankful that she can write her name, she’ll feel cheated, and dumb. (Note that this can also work in reverse, and that people with disabilities may be very proud of their “simple skill” gains, but choose to keep them private). For any and all types of disabilities, be thankful for what you wish–but also, focus on the things the person is most thankful for, and help him or her celebrate those things.

So, after reading these misconceptions, what have we learned about thankfulness and disability? I gave you four misconceptions, so now:

Four Truths about Thankfulness and Disability:

1. Give thanks for the strengths and accomplishments of your loved one, instead of thankfulness that his or her weaknesses are not “worse”

2. Celebrate the things your loved one is most thankful for, whether that’s learning to tie shoes or getting a scholarship

3. Let thankfulness come naturally, rather than forcing it–expecting your loved one to be thankful for everything or nothing

4. Express your thanks for your loved one and what he or she has done to enrich your life!