This is for Blogging Against Disablism Day.
I read a lot of blogs written by women who have adopted children of different races from themselves, and I have learned a lot about some of the issues they face. One thing they all seem to struggle with and are very conscious of is trying to ensure that their transracially adopted children find a community of peers and role models of their own race. That can be a struggle when one lives in a predominately white midwestern town. Or when moving to a new location and trying to pick a neighborhood that has at least some other students of your child's race. There are decisions about Chinese school, finding churches that are predominately black but also are comfortable for the whole family. Seeking out ethnic social clubs, either formal or informal ones. And pushing past ones comfort zone to enter into social situations and relationships where the parent will be the only white person in the room so that the child need not always be the only person of color in the room. I have to commend these parents for all the thought and effort and stepping out and taking risks that they do to give their children a sense of belonging and at least a shot of being in a safe comfort zone.
American Family has a list of links about this issue that I read through (scroll to near the bottom of the post.) I found one particularly interesting. A white mom with a black daughter (This Woman's Work) took her daughter to a very much anticipated ballet class. She was the only black child in the class. On the first day, an incident happened where she had mentioned that she had brown skin, and another well-meaning white mother said, "yes, and it's beautiful." (Read the full story and it will make more sense.) The girl suddenly got uncomfortable and miserable. Later it was decided that she needed to go to a ballet class that had some other kids of color in it. Even though nothing overtly racist happened, she felt self-conscious enough about being the only minority that her family felt the only solution was to find another ballet class.
What does all this have to do with blogging against disablism day? Well, it all made me think about how we talk about (or don't even think to talk about) how disabled kids are integrated in society. If anyone talks about these issues at all, it is in regards to inclusion, the least restrictive environment, getting kids out of the self-contained special schools and into the regular classrooms. Basically, for kids of color, we talk about ensuring that they are integrated with their same race peers. With Kids with disabilities (KWDs), it is all about getting them away from exclusively being with other kids with disabilities and getting them with the "typical" kids. What are the ramifications of this?
When I was in grad school, I worked with kids with significant and multiple disabilities. Inclusion was the gospel. It was all we talked about, all we practiced. Getting these kids, who usually had some combination of cognitive, motor and sensory disabilities, into the regular classroom in their neighborhood school with their same-age peers was all we worked on. It was THE GOAL. The thing that was going to liberate kids from discrimination and segregation. And as much as I didn't want to see KWDs locked away in some hidden warehouse away from society, the whole thing gave me a three-year stomach ache. But I was the best little grad-school advocate for inclusion there was. I played the party line to the hilt. Even though, somewhere down in my gut, I knew that something was wrong. Something I couldn't articulate then. But I think I may be able to now because of my increased understanding of these transracial adoption issues and how they transfer to disability as being "transcultural".
What is unique about most KWDs is that they are born a minority into their own family. Most minority children are born into a family of minorities, who have many connections with their own ethnic and racial community. So even though they still are a minority in mainstream society, in their own little microcosm-- their homes, their neighborhood, their schools, their family members--they spend a good deal of time living as the majority culture. Like disabled kids, transracially adopted kids sometimes don't have this advantage, and thus all of the problem solving mentioned above. But, the thing that (I would hope) most transracially adopted kids have is that they were knowingly and voluntarily added to the family. One assumes the family who adopted them has at least some level of acceptance and cultural competence and lack of overt racism or they would not be willing to adopt a child of a different race. Many parents who transracially adopt already also have at least some connections to the child's racial heritage, and they made these connections voluntarily as well.
Not so with disabled kids. Most disabled kids are born into a family who would not voluntarily have chosen to have a disabled child. They may have no connections with disability culture and may, in fact, have never even met another person with the child's disability or any disability for that matter. They may harbor deep misconceptions and prejudices about people with disabilities. And they grieve the loss of the nondisabled child they expected. Although many parents do a commendable job getting schooled about disability really quickly and often have wonderous transformations in thought and even in cultural identity because of it, this may take years. And for some families, the fear and hatred of the sick and disabled never truly goes away. They may come to love their child, but never are able to love that part of them which is disabled.
The difference between what parents of transracially adopted kids and parents with disabilities often strive for is quite opposite. Transracial families strive for ways for their child to embrace her heritage, be proud of it, and find comfort and acceptance in the community of their birth. Families with disabled children often try to cure, to correct, to minimize, to go on in spite of, to overcome, to normalize, to integrate into "typical" culture. To do whatever it takes to make the disability part of their child be as insignificant as possible as a means to integration into mainstream culture. Emphasize the normal. De-emphasize the abnormal. It is the child that needs to change, to integrate, to assimilate to the environment as much as possible. Instead of, in the case of many transracial families, finding ways for the environment to change to accept the child's perceived difference. I'm being very cut and dry about this, of course, there is obviously a continuum of attitudes here, but I think you will see the trend as true.
So, lets talk about me now. Allow me to share my experiences as a disabled kid growing up and assimilating into mainstream able-bodied culture. My parents loved me, did what they thought was best for me, did the best they knew at the time. But it was no secret that my disability was a bad thing. A thing I had to get over, hide as much as possible, to overcome it, not make a big deal out of it, minimize it, never draw attention to it, and make it go away as much as possible. I went to a mainstream school all the way through. And didn't even know I was different until one day in the school library when I was squinting a little too hard to read a book. My third grade teacher came over and asked if I was having trouble reading. She did a quick experiment by asking if I could see another larger print sample of text better. (Well, yes. Couldn't you?) Within a couple of weeks, my whole school life changed. I was thrown (with no explanation) into the IEP assessment process. Meetings I was not privy to were held, large-print books were ordered, a special ed teacher was mandated, big tables with special lighting and magnifiers were squeezed into the back corner of the classroom where I would be 'segregated' while I was integrated into the regular classroom.
For most of my public school career, I was a resource room kid. I was the kid who came into the classroom and stayed for the first 15 minutes and then was dismissed to that little room at the end of the hall to get extra help with my work. I had a love/hate relationship with the resource room. I hated the singling out of me, the long walk down the hall. The stigma. The curious questions and the teasing. I hated that things happened in the regular classroom that I missed, both academic and informal. I was never really a full member of the class because of this. I hated that I was put into a club I never voluntarily joined. That I was a special ed kid and was only really permitted to hang out with the special ed kids. I hated that the regular classroom teachers dismissed me and my questions or needs because special ed would deal with me, so why should they take the time. I hated that in the caste system of public school, I was automatically in the bottom wrung.
But secretly, behind the mysterious doors at the end of the hall, the resource room was often my only sanctuary in a day filled with anxiety. Even though the teachers, the school hierarchy, and my own family thought that these kids were losers and were of no consequence; these were my people. My memories of the hours I spent in the resource room are not of me huddled in tutelage with a special ed teacher, there was very, very, very, I can't even make you understand how very, little of that which ever went on. My memories are of social hour in a safe haven. The resource room was 95% free social club time and maybe 5% school work related. The only times I can really remember doing school work in the resource room was when I had to take a test there. My able-bodied cohorts were working on their math homework back in the classroom. I had my book open, pencil in hand, but I spent my time talking and goofing off and not writing a single problem down. Everybody did this. The resource teachers were part of the club. They never did anything. They would joke with us and tell us about their marital problems or their date or their new car or their gossip about the other teachers. They were the only adults that treated us like people. I had such fun with those people. Even some that I really didn't like were enjoyable to be around in there because they were part of the group. One of my best memories of Junior High was when this wonderful miracle happened and I got excused from PE for the REST OF MY LIFE!!!! due to the danger of a head impact from a ball or whatever might risk my eyesight. And I had to spend my PE time (FOR THE REST OF MY LIFE!!!) in the resource room. That year, I spent an hour each day joking around with this kid, Scott W. We never talked outside of the resource room. Pretended we didn't know each other. But we would spend that whole PE hour goofing off. Good times.
But we pretended we didn't know each other in the halls because of the social predicament we were in. That all special ed kids are in. You like these other special ed kids. You have fun with them and respect them. It feels like they are your equal peers. But out in the world, you see that they are less than human. They are not respected and they are 'beneath' everyone else. Kids, teachers, whoever. And in your little head, you don't want to be them. You think if you disassociate from them, pretend you are above them then you might actually be perceived as being above them, as not being one of them. The only way to put a bigger target on your back is to run in a pack of others with a big target on their backs. You convince yourself (and are told by your parents) that you are too good for them. But inside, you know, that you are them. And if your parents think they are losers, then they think you are a loser, too. Even if your parents aren't thinking that way directly, they are trying to distance you from that which you are. That awful loser part of you called disability.
When I graduated high school, the very next day I moved into a blind rehabilitation center for the summer. There were about 10 to 14 blind people, of all ages and walks of life there. But in the summer, there were several young people like me who had just graduated high school and were in this summer "transition" program. We instantly separated into two groups. What we then called the Weird Ones and the Cool Ones. I was a Cool One. Along with my friends Kory, Susan and Heide and a few others. Why were we cool? Because we knew how to socialize in the sighted world. The weird ones came out of the School for the Blind. I can't describe exactly what made them weird, but they were weird. They really had very few social skills. This experience, more than anything, made me believe that disabled kids need to be included in regular classrooms. Because who wanted to be that weird. These people--even though they were not dumb--had no skills, no hope of ever having anything more than a dishwashing job. They were never going to be accepted by society. Us, the Cool Ones? We were going to college. We were never going to live off disability. We were always going to work. We were going to pass in the sighted world.
But also what happened there was that I found my brethren. And I found my pride in who I am. Instead of hiding my blindness and acting like I wasn't disabled. Being ashamed of it, I boldly stated that I was blind and proud. This was because I, for once, was among my own people. Peers and role models like myself that were out in the open, doing things in the community. Competent and proud of who they are. Not shamefully hidden in a secret room at the end of the hall, spending our days trying to hide the big scarlet mark of our disability from the outside world. The ironic truth is, that as much as I made fun of the weird ones that came from the institutionalized school, if I wouldn't have experienced this segregated setting for disabled people, I would have never made it through college. I would have never had the skills to succeed, the pride to fight for what I needed, the confidence to get the jobs I've had, the guts to become a parent. I would have ended up a college drop-out, living off SSI or something, just like the weird ones.
As I look back, I can now see that there are many complex reasons why the weird ones were the weird ones. It has more to do with institutionalization in the warehousing sense; institutionalization gone very wrong, rather than the fact that they weren't mainstreamed. These are kids who lived in a boarding/dormitory situation from the time they were 4 or 5. They were surrounded by blind kids, but no blind adults. And often had no family support. In not all, but some cases, boarding these kids at the blind institution was their parents way of having not to deal with the thing they hated, the blindness. Some kids were wards of the state, some only saw their parents on weekends. Parents who sometimes made no effort to learn about their child's disability. Also, the expectations at the school were horribly low, and these kids just didn't learn good skills there. I'm not going to categorically say that all kids who go to schools for the blind are weird or have no skills or disinterested families. Whole subcultures have grown out of schools for the deaf. But I am going to say that just because this kind of institutionalization puts kids at great risk for failure, that doesn't mean that the answer is full-inclusion all the time. There are happy mediums.
One of those happy mediums was at a school I worked at as a student teacher in Nebraska. It was a regular mainstream elementary school, with a population of about 20% deaf and hearing impaired kids (who were obviously bussed in from the surrounding metro area.) There were probably anywhere between 5 and 10 disabled kids in every classroom. There was a full-time interpreter and special ed teacher (sometimes the same person but usually not) in each classroom. Everything was interpreted. The regular teachers took sign classes, and although not necessarily fluent, could communicate with the deaf kids. There were after school ASL classes for the hearing students, so a lot of these kids knew sign and could communicate with the deaf kids. Group time in the classes were divided between the sped and regular teacher and not necessarily all deaf kids went with the sped and all hearing kids with the regular each time. It was mixed up. It was a nice environment. It was really the best of all worlds.
And it isn't there anymore. The school is, but not the deaf program. Parents complained about the long commute by bus and wanted their kids to go to the same school as their neighbors kids. Professors and inclusion advocates shouted full inclusion and least restrictive environment. The deaf kids of deaf adults went to the deaf school and the deaf kids of hearing adults went to their neighborhood school. Where they were the only deaf kid in the whole school. Where they had to fight for interpreter time. Where the traveling teacher for the deaf had to pull them out of their class to fit her schedule. Where the other teachers and students couldn't communicate with them. Are they better off in their neighborhood school? In the least restrictive environment? Being the only deaf kid? The law (and presiding politically correct opinion) say they are.
By the time I got to grad school, there was a war going on in the schools between special and regular education. And I, a working peon grad student for a hot shot university who was on the forefront of full-inclusion for all kids, was right in the eye of the shitstorm. You didn't so much worry about getting your practicum assignments done as you worried about the school district kicking you and your uppity faculty advisor out of your placement before the semester ended.
Simply put, regular ed didn't want these kids. Especially MY kids, the ones with the most significant disabilities. Why would they? Regular ed is an assembly line. A conveyor belt meant to get the greatest amount of kids through to an average, work-ready education as they could. Special Ed was INVENTED so that regular ed could continue their mission. Special ed's primary use was to get the kids who couldn't sail along nicely on the conveyor belt out of the fucking way. They were just cogs in the wheel of efficiency. Now, special ed wants to PUT THEM BACK? And how to do that? By asking the regular ed teacher to stop the conveyor belt. Shut down the assembly line. Treat every kid as an individual with individual needs and basically become a special ed teacher. Don't special ed teachers know that they have jobs because regular ed doesn't WANT TO BE special ed? Regular ed doesn't WANT to individualize education. They want to get as many kids schooled and out the door in the most efficient way possible. Regular Ed wanted special ed to stay in their place, special ed wanted to change the very fabric of the regular ed machine. It was an attempt at a hostile overthrow. And it was very, very hostile.
And mixed in all this shitfest were the kids. I had kids who were developmentally delayed to the point where they could not symbolically communicate, AND were quadriplegic, AND had vision and hearing impairments. And they would sit in the regular classroom all day long...and do nothing. They were not supposed to be doing nothing, mind you. Us in special ed had wonderful plans and programs all written up for them. No they weren't supposed to learn their multiplication facts in math class, but they were supposed to work on making eye contact while (an aid helped them) hand out papers to the other kids who were working on multiplication facts. And they were supposed to play games with at least three students and work on their objective of lifting their eyelids to indicate the affirmative and close their eyes to indicate NO. Oh, we had wonderful, wonderful plans and programs for them! All written out! On paper! With data charts and graphs and everything! And we had training sessions for the aids and teachers to implement the plans, and we would be available any time to call if they had questions (when meanwhile we were off site, busy monitoring our 12 other mainstreamed kids with PLANS!)
But our kids sat all day long. And did nothing. Because our plans were never implemented. No one knew what to do with our kids. Those sympathetic to our cause tried but they just had no time. They had 30 other students who were actually more annoying and noticeable when they tugged on the teacher's shirt or raised their hands with bright faces and questions. Meanwhile, our kids sat. Silently. With no means to communicate their needs or wants to a distracted teacher. Or an aid, who for 7 bucks an hour, just wanted to get through the day, and just wanted to rest between lugging this kid around to bathroom breaks and PT and OT and feeding tube sessions. And the unsympathetic teachers? Just laughed and scoffed in our face.
There were certainly moments of success, but overall, it just didn't work for these kids (in my opinion, others will say it is wonderful to have these kids fully included, even if they sit all day...cause that is all they do anyway.) I remember specifically a girl I really liked who I was taking from class to class in her mainstreamed middle school. She was a personable girl and well-liked by her classmates and teachers. She could raise her hand and answer simple yes/no questions. She could walk with a walker but mostly used a wheelchair, she was visually impaired and had CP. I remember walking her to music class. She really liked it and really could participate and there was a great teacher who was quite innovative in finding ways to include her. But we only got to be there for the first 15 minutes of class, because then she was pulled out for physical therapy. Then, later in the day, we would go to PE class. It was awful. The teacher was a jock asshole who didn't want her there and looked at her with contempt every time she spasmed. He did nothing to try to include her. She hated the noise and was afraid of the balls. He didn't like me either, because I was blind and I couldn't much help with the class due to my own disabilities. I actually would get physically sick to my stomach every time I had to take her there. I would honestly get my own junior high flashbacks to my own PE experiences . And now double the anxiety for my student as well. She was like me in a way. I am actually pretty athletic (or I can be) and I am good at a lot of athletic things. I could swim, skate, dance, do gymnastics, some track and field stuff. But I could never do anything with balls. Not just bad, normal bad. But HORRIBLE, freakishly laughably horrible with ball sports. Cuz, duh. I'm blind. Dana, in her way, was an athlete as well. She loved physical therapy. She loved physical movement and soft ball or balloon games, dancing, walking in her walker, doing OT tasks. She, like me, hated PE. Why couldn't anyone find a way to play up our strengths? Why did being included with our peers where we could never measure up supersede physical activity and health, which is what PE was supposed to be about. I could have done some individual sports and not ball sports and been quite good and had fun. Dana should have been doing PT with other disabled kids like her during PE class, NOT missing music class. And she should never have set foot in that awful shithead's gym at all. But! She must be fully included! Just like the other kids! Defies logic.
So, in the very university program that was supposed to train me to advocate for the full-inclusion bandwagon, it actually made me sort of anti-inclusion. Which is NOT to say that I think we need to go back to the full segregation of self-contained special schools. I think integration is important when it makes the most sense. But what full-inclusion in its extreme incarnation feels like to me IS segregation. Segregation from one's disabled peers. From one's culture.
I think the nondisabled kids get much more benefit from having KWDs in amongst them than the KWDs get from being there themselves sometimes. And while that is great that the nondisabled kids get that exposure, it shouldn't mean that the disabled kid should have to sacrifice all contact with other disabled kids to teach them a nice warm fuzzy lesson. Kids with disabilities, unless they really are segregated in a warehouse institution, are going to have plenty of exposure to able bodied culture. Just like racial minorities, you can't not be exposed to mainstream culture. It is impossible to avoid. What kids (and all people) with disabilities need is access to their disabled peers on a regular basis. And not only other kids, but adult role models.
And I think this has to be more than Very Special Summer Camp or Very Special Olympics or other contrived situations. Summer camps can be okay, but kids need to see other people with disabilities in every day existence. They need to see them doing all kinds of every day things. If possible, they need to learn the history of the disability rights movement, the heroes and leaders, the triumphs and the travesties of justice. And if they can't learn this because of their own cognitive disabilities, then their parents or key people in their lives need to learn. If only to know all the options and possibilities out there for their kids.
But in some cases, there is such hesitation among parents of KWDs to have anything to do with the disabled community. Some of it is anxiety about working outside your own culture and comfort zone, and that is understandable. But I think it is more than that. I'm not an expert on the history of transracial adoption, but I think this emphasis on ensuring their kids have regular contact with others of their rac e is a fairly new phenomenon. I think the trend perhaps just a decade or so ago was to do the colorblind thing and act like race didn't matter. Like they didn't even notice that their adopted child was black or whatever race. And like the best way to deal with it would be to deny it and integrate the kid into white culture as much as possible. There just wasn't a priority on finding a community of peers and mentors of the child's race. No one thought it would matter. But I think they discovered that it did. The transracially adopted adults struggled and felt lost and felt like they didn't belong, and so slowly, the parents have started to recognize and address that. I think parents of KWDs are where the transracial adoption families were 10 or 20 years ago. It is painful to recognize (especially when you never volunteered for this) that you do not necessarily share a very basic cultural experience as your own child. If you are a member of the majority culture, you are never going to truly know how it feels to be an oppressed minority. And sometimes, the thought that you might have to go outside of your own family, your own culture and your own comfort zone to seek out someone else who can help fulfill a need that you will never be able to fill can be difficult. Especially when so many parents of KWDs are not even ready to admit any of the implications of disability, that it should be talked about openly, or that there is even value in the culture at all (or that it even exists.) In these cases, the parent needs to work on themselves first. But meanwhile, the kid is growing up. In some ways very isolated and alone.
Just as these white parents of kids of color have gone to great lengths to make sure that their kid is integrated into their racial culture, parents of KWDs need to do the same. It may seen counterintuitive when so much fighting has been done to get the kids into the regular schools to begin with. And again, to be clear, I am NOT advocating for anything involving stripping the rights of all kids to go to their neighborhood schools and be in their least restrictive environment. All options should be open, and kids should have access to any opportunity that makes sense for them. This is what I am saying: Full inclusion is not worth being the only disabled kid in the class all the time for 12+ years. As well as the only disabled kid in the home and in the community. It is not worth sacrificing sound educational goals to sit all day in an ineffective setting and waste time doing nothing. Nor is it worth the kid being miserable being forced to participate in a setting where he encounters hostile and hateful people who don't want him there in the first place. And she should not have to be the token gimp whose only purpose is to 'educate others about diversity.'
Kids with disabilities need to be given the opportunity to have access to their own community. The disability community. On a regular basis in natural settings. Even if it makes the parent have to move far out of their comfort zone. Even if the parent has to move across town. It is that important. When I think of my own life overall, the absolute worst years of it, hands down, were the years from about age 11 to age 17 or so. Why? Because when I was finally old enough to realize the implications of my disability, I was effectively trapped in settings full of disdain and discomfort about disability issues. Both at home and at school. I was imprisoned by my isolation. I universally didn't belong anywhere. I didn't know a single soul who was blind or deaf. I didn't see a single good example of someone who was disabled except for my fellow disenfranchised Special Ed peers at the end of the hall. If I wouldn't have gone to that summer rehabilitation program, which basically indoctrinated me into the disability community (and which is the event that my parents would probably tell you that I cracked up into the radical crazed bitch I am today) I think there is a very good chance I would have eventually become suicidal. To lose my hearing and vision without the disabled community? Without the confidence they gave me and the pride they instilled in me? The skills I learned from them and the examples they set? Seeing through them that I will be okay and I can go on no matter what my body does? That I don't have to believe my own press about how pitiful and useless people like D and I are? And the balls to do what I want even though everyone says I can't? Without my connections to disability culture, I don't know how I ever would have survived.