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.