Twinkle Little Star

RIP: Harriet McBryde Johnson

Oh, so sad. Harriet McBryde Johnson, one of the great leaders and fascinating writers in the disability community, has died at the age of 50.

Kay Olson over at the Gimp Parade has a nice tribute and a wonderful list of links to her work.

This from the NYT:Mag is one of my favorites. It is called the Disability Gulag.

The Room At the End of the Hall: When Integration = Segregation

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.

 

Disability Awareness

*Scene: Naim and Aaron looking out the front window, waiting for our friend, K, to arrive. Light rail train goes by.

A: The train! The Train! Is she coming, now, mama? Is she coming?

Me: No, she's not coming on the train, she's coming in her car.

N: She drive her car?

Me: Yes, she is driving her car here.

N: K need a car, and Grampa Fred need a car, and J need a car.

A: (solemnly, in serious explanation tone) Yeah. They need a car to move. They have to have a car to move.

N: (Nods empathetically) Yeah. They can't ride the bu-US, or ride the tra-AIN, or walk on the sideWALK like we can.

A: (also empathetic) Yeah. They do it a different way.

N: Yeah. They need to drive their car. Then they can't go to the playground on the way to daddy's house.

*Please excuse my complete inability to accurately recreate toddler talk. Trust me, it was cuter when they said it.

Wanna Schmooze over a Book? and Disability PR for Kids

This week, instead of blogging, I got engrossed in a thread on The Whatever regarding homeschooling. If you want to slog through 178 comments, you can read what I have to say there. (I'm the one known--curiously--as "Lisa" over in them there parts.) And yes, I should have shut my pie hole around my third comment, but by that time, I had let it become sport.

Anyway, someone on that thread recommended the book, "The Underground History of American Education" by John Taylor Gatto. It is actually online in its entirety, so I've been engrossed in that. Gatto, you may know, is famous for quitting his 30 year PS teaching career with a scathing acceptance speech at his NY Teacher of the Year ceremony, and his book, "Dumbing Us Down," which I have read. This book goes entirely further into the history of compulsory education. He comes to it from quite a libertarian angle, so I don't agree with everything he says, although my experiences as teacher and student do not disagree with many of his conclusions. I am a weird amalgamation of socialist libertarian, if that is even possible. I think we should all take care of each other financially until every last one of us, including the earth, has our basic need for food, shelter, clothing, health care, community and access to education met. Then, I don't care what you do. You might say I'm economically a socialist but socially a libertarian. Or something like that. Anyway, the book is not only teaching me a lot of American History I did not know (and showing my how bad my sister's and my schooling was, even though by relative standards, it was quite good), but is giving me insight into such things as family issues, community issues, church issues, etc.

But I don't want to write about that until I've finished the book and had some time to digest it. Also, if anyone else wants to read it or has read it, I'd love to do a little book club style bloggity-blog-blog thing about it. Let me know if you are interested and maybe we can set a date.

Instead, I will answer an email. Gracious reader, Wendy, asks:

I have a 3 year old and am interested in your thoughts about talking to kids about obvious disabilities.  The other day, a man walked past us using a cane and my son turned to watch him.  After the man passed, I just said, "that man is using a cane to help him walk". We haven't encountered too many people in wheelchairs, although we've seen a few and I try to comment to my son in a low key way.  My intention is to educate him and maybe prevent loud questions that could be embarrassing(more for me than the person in the wheelchair, I think). 

 

So what are your thoughts?  I know that it's different for you because your kids are used to seeing their dad in a wheelchair.  What advice do you have for those of us that have limited contact with people with disabilities?  Also, how do you suggest talking about mental illness or developmental disabilities?  I have some thoughts but am interested in yours.

 

She also asks if I have already written on this topic and if so, where? To which my answer is, "Hell if I know. Have I? Anyone remember?" Its almost easier to write it up again instead of search for it. And my kids are also three, and things are coming up for us, too.

Well, first of all, I think what you said was fine. Second, my kids probably, in a way, know less about disability than you think. They are used to the accoutrement's of disability such as wheelchairs, hearing aids, white canes, IV pumps, etc. But they really have no idea that these things are in any way different than what most people use. But more on that in a sec.

I tend to not make a point to give a big explanation to my kids about anything unless they ask a specific question (or seem so perplexed and bothered about something they see that it would comfort them to have an explanation.) For example, I have not ever talked to my kids about race. And I don't expect to until the issue comes up by itself. They see people and play with children of different races almost everyday. They don't seem to think anything of it, so why make a big point to explain something that they don't see as different. Now this doesn't mean that eventually, when we start learning about American and World History, for example, that we won't have the hard discussions about race. But right now, it seems like pointing out that their little friend so-and-so has different colored skin than they do is kind of wagging the dog. I mean, I don't go around making a point to tell them that so-and-so has different colored eyes or is a different height or weight. What do you think? Is this the right way to handle it? It is hard to know whether you should be pre-empting any subconscious negative information they are getting from our culture about these things, or if by pre-empting it by pointing it out, you are actually putting negative subconscious information in their heads.

Now, they have asked gender specific questions and I have answered them matter of factly. Mainly things like, "mom, do you potty out of YOUR penis, too?" And then today Naim proclaimed, "Mom! You have BIG breasts! And I have little breasts!" So I just matter of factly say that women have bigger breasts than men, blah, blah, blah. But I haven't even gone around (as I've seen some parents do) asking, "There is Jane. Is Jane a boy or a girl?" I figure Jane can self-identify if it is important to her that they get her gender right. Besides, that stuff is so ingrained in our culture, they already can gender identify. I never had to say anything to them about it.

So with D's and my disability, I have really just explained things as they came up and answered their questions. They are just now starting to realize that D can't walk. They still don't quite articulate an understanding that I don't hear as well as they do. Yet, they accommodate me naturally by bringing stuff over to me or coming over to me to talk to me. Sometimes, they will say, "What's that noise?" And I will say, "I don't hear the noise you are hearing, because you can hear better than me. What does it sound like?" And then sometimes they will go into great detail imitating and describing every sound they hear for me. And it even gets out of hand silly when they start telling me they hear elephant sounds or space shuttle sounds in a fit of giggles. But I don't think it registers to them that I am different or less than in any way because of this. When they play "house," whoever is the dad has to  find a wheelchair to sit in. Now they know that there are other men called dads and that they don't use wheelchairs, but in their mind dads use wheelchairs. Whenever they draw pictures of me (or moms in general) they draw hearing aids. Moms have hearing aids. End of story. When they draw their dad, he looks like a big head on top arms on top of 4 to 8 circles for wheels. But they draw themselves with legs. I have told them that not all moms have hearing aids and not all dads use wheelchairs, and I think they cognitively get that, but they don't use those images in their imaginary play. When they see other people who are disabled, they really don't seem to notice. It is just par for the course for them. It will be interesting to see how it unfolds for them to come to understand that we are the different ones. Or at least that is how we are thought of.

I know this isn't exactly what you are asking, but I mention it because people ask me sometimes, in serious hushed tones, how we are "handling" teaching the kids about disability issues. The truth is, we aren't. We are just living our lives and not shoving it down their throats that we are so unique or different. But yet we do answer all of their questions honestly and matter-of-factly.

So, that being said, I don't know if it is necessary to say anything to your kids about people with disabilities unless they ask or seem uncomfortably confused by it. I used to do these "disability awareness" thingies at kid's schools, and I still do them from time to time, but I've come to think of them as sometimes doing more harm than good. It is like putting a big, fat sign that says "THIS PERSON IS DIFFERENT. LEARN THAT!" on us, when kids might not have thought we were all that different before, just more of a curiosity. Now, when I am invited to do kid awareness things, I say that I'm not going to stand in front of the class and tell them how different I am. Nor am I going to do the "I'm just like everybody else...except" dog and pony show. Now I try to set it up just so I spend some time with the kids doing something that they are already doing, like an art project or something. I will introduce myself with a 30 second intro about me, like anyone would, and I do say that I cannot see or hear very well. And then I just interact with them. And they ask questions in the process and I answer them.

Also, I will say, that in the disability community, kids get a pass. I don't like to speak for everyone in the community about this, but I have found that to be universally true in my experiences. Kids staring or asking questions is really no problem. Unless I am in a mad rush somewhere, I will always happily answer any kid question. This "PASS" is in response to the backlash that happens when kids are shushed and pulled away and told not to stare at us by their parents. That is the perfect way to ensure that your kid thinks we are freaks. We look different, we are doing things differently, kids should stare. It is only natural. If they are yanked away and scolded for staring, all it has done is enticed them to view us as fascinating freaky people that are so bad, we make mom uncomfortable.

Also, I personally would rather have the kid come up to me and ask me a question directly, rather than have their mother shush them till I've passed and then give their own explanation. Because often, their explanation is wrong. I'd rather they just get it from the horses mouth. And also, if I find their question to be too personal, I'll politely tell them that it is too personal. This way, they might actually grow up understanding that they don't have the right to ask disabled people anything they want to know. And if I am too busy to answer, I'll say something like, "That is a good question, but I don't have time to answer it right now." So then they know that it isn't my JOB to stop and educate them, but I will do it voluntarily if I can.

When I had my guide dog, I heard parents say all kinds of things to kids that made me sort of cringe. One was, "She can't see the traffic lights so that dog takes care of her and takes her across the street." Well, actually, no. No guide dog can see traffic lights or knows when to cross the street. We tell them when it is okay to cross the street by using our skills and hearing, just like white cane users do. Where a guide dog can help is to find the straightest path across the street to the opposite sidewalk, and to help us know which way to dodge an unruly car should it come careening around the corner. The other thing that happened all the time was when I went anywhere with D, people made up whole stories about us to tell their kids. That man can't walk so he has a dog to catch him in case he falls out of his wheelchair and has a seizure and that woman is his nurse who takes care of him. Okay, whatever. But do people know they are just making shit up? It is always about how we are poor things that need someone (dog or human) to take care of us.

Worse yet is the people who talk to their kids is very value judgment-y ways like, "That person can't see. Aren't you lucky that you can see? Doesn't that make you feel bad that she can't see? Maybe you can use her as your community service project for today and go over and annoy her until she lets you help her with something she doesn't need help with." I think it is very important that parents aren't using us as their kid's feel sympathy and be grateful for what you've got feel good moment of the day. I mean, why not just take a whole bag full of prejudice and intolerance and ram it down your kid's throat?

The thing about kids and people with cognitive disabilities is that most of the time, kids just don't care. Sometimes if a person is displaying some kind of socially unacceptable behavior like drooling, kids will ask or stare. And then I'd just say that all people are different and have different abilities and some people aren't able to control their saliva very well. But if it is just that a person that a kid comes in contact with who is not acting as intelligent or mature as typical for his age, I'd just let them get to know the person. Or if it is a passerby, say nothing unless asked and then I would do the "everyone is different with different personalities" line. I think the main idea is that kids pick up on how comfortable YOU are in the situation. So if you really want to portray acceptance of people with disabilities, I'd start with yourself first. And in the meantime, explanations should be short and sweet and factual, and most especially value-neutral.

So, in summary:

1. Work on your own attitude first, then your kid's. Always try to model comfort and respect around us.
2. Don't point out differences that your kid doesn't even see.
3. In the disabled community, kids get a pass in regards to staring, asking questions. It is our way to try to undo the mess the parent is about to create. So don't worry too much about it.
4. If appropriate, let the kid come up and talk to us about their concerns. But know that we aren't obligated to educate them, spend time we don't have with them, or cross our personal boundaries with them. We are providing a courtesy that hopefully serves both parties well.
5. If not possible for your kid to talk to us, answer their questions in matter-of-fact, value neutral ways.
6. If you don't know the correct answer just say so. If the kid is still curious later on, do some research by going directly to disabled self-advocate sources, NOT professional service provider or medical sources. You will get a WAAAY more real life and accurate answer that way.

Readers with disabilities? Feel free to add your opinions in the comments. Disagree with me? Agree? Have other ideas? Let Wendy and me know.

Not the Medical Post that Bliss Requested; This is Where I Rant and Stomp and Flail My Arms

ETA: You are about to read a very imperative shit fit that I'm required to have right now. Much as it may seem like I hate all health care workers, that is not true. We have truly had wonderful health care workers. Mostly nurses and therapists, but an occasional doctor, even an occasional egotistical arrogant asshole doctor that undoubtedly smokes crack in-between patients, but whose skills are teh awesome. Insurance companies, though? Yeah, we pretty much hate all of them across the board.

Over the weekend, D started getting sick again and had a fever. His nurse came over and found a VERY DISGUSTINGLY STINKY leftover piece of wound vac foam that had not been removed as it should have in some previous dressing change. It looks like psuedomonas.

So he is back in the hospital. This time, at the burn center again because they do the best job as far as controlling infection. The bad part of that is that the kids and I can't visit him there. kids under 12 aren't allowed. At it is clear across town and hard to get to anyway. I would have to find a babysitter to cover three hours of simply travel time. I'm glad he is there, though. They are militant about infection prevention. I get sick of the fact that he can't go into the hospital for long without risking that the hospital itself will make him sicker. Irony, no?

I have not been able to write coherently about the subject that Bliss requested: How medical people should approach people with disabilities. Because there is just so, so much wrong with it all right now. And it goes beyond people with disabilities and to just patients in general, especially those with chronic conditions. And then it goes to a systemic level in my head. Mainly I want to shake doctors and say, "Why don't you fight for us?" "Why don't you care for and value our lives?" Because they generally don't. The whole thing just blows up in my head.

D and I were discussing the fact that since his initial foot amputation, every problem after that has been contributed by or due to medical error or other external factors in the medical system that are beyond our control. To give you a rundown:

• In July of 05, D had terrible pressure wounds on both feet. Although he does take responsibility for the fact that he delayed in getting treatment for too long, a big part of the problem there was that a tilt-in-space seating system for his wheelchair was prescribed in 2002 to help his foot circulation. This would help in preventing pressure wounds in his feet and aid in healing. It took over FOUR YEARS for the red tape of Medicare to approve of that chair. He had his left foot amputated and a skin graft done on his right foot. He was hospitalized (sometimes in the BICU) for 3 months.
• In December of 05, he got the chair he needed, but it didn't work properly. Basically, it was a lemon. It took six months to get Medicare to approve repairs. In which time he used his old, stationary wheelchair. In January, his right foot had still not healed and taken to the graft. Although this is probably no one's fault directly, not having the proper wheelchair did not help. Also, the specialized air mattress that D needed after his foot amputations could only be rented by Medicare, and they only allowed for it to be rented for 10 weeks. Then they took it away. D went back in the hospital in Jan. of 06, and had additional surgery on his foot. He recovered in a nursing home, because we were not given enough funds for the amount of home health he needed at home. At home, this would have cost roughly $160 a day. His nursing home charges were between $700 and $1200 a day. Also, many nursing homes would not take him as a patient because he wouldn't turn a profit. So he did not have a choice as to where to go.
• He was hospitalized/nursing homed this time from early January to late April. During his time in the nursing home, he was not able to eat the high calorie/high protein diet that was prescribed for him. They offered things like plain, white bread with a piece of cheese and Bologna, tea, and a fruit or even just jello for a meal. His family and I had to supplement the food he ate in there almost daily. Furthermore, while in the nursing home, he acquired another pressure sore on his foot, and a very problematic pressure sore on his coccyx (butt bone). He left in April not having recovered, but because it was getting dangerous for him to stay in the nursing home.
• All summer of 06 was spent trying to heal the coccyx sore. He spent part of June and most of July bed-bound in his apartment in a makeshift bed that he made out of an old gel mattress, memory foam, and an inflatable overlay he bought online.
• In August, he had another skin graft surgery on the coccyx wound. He was hospitalized from August to November. All of these wounds were infected with MRSA or other bacteria, so each hospitalization required a PICC line and IV antibiotics.
• 2007 was a good year. No major hospitalizations or medical problems to speak of.
• In November of 2007, he was to go in for a routine surgery to change out his infusion pump as the batteries were running low. We were excited to get the new ($20,000!) pump because it would need less maintenance. According to the infectious disease dudes, the pain management surgeon should have started prophylactic antibiotics before surgery and also had D hospitalized a few days before surgery and prepped with a few days worth of antibacterial showers and betadine in isolation before surgery. None of this was done. No special precautions were taken due to his history of MRSA. In fact, every time he is in the hospital, they put a big fat sign on the door that says you need to gown, glove and mask before entering the room. I would say about one of ten medical personnel ever bothers to do this. The main culprits I see are the food handlers. Who go from room to room picking up trays, throwing the trays together that people have eaten off of and then going to the next room without even washing their hands. Once, D had a visitor who was a social worker from the hospital. She actually had to ASK what the big stop sign on the door was for. She thought that he just didn't want visitors. (When I worked at a medical school, I worked in a different building devoid of any kind of patient contact in an office setting. And we STILL had to take seminars and tests about universal precautions and infectious diseases. WTF?)
• After the surgery, D started getting sick and the wound didn't heal and was oozing goo. The pain management people treated it with antibiotics without culturing it.  They did not consult with Infectious disease. It was D who eventually had to do that.
• In January of 08, the pump literally started coming out of D's body. Pain management decided it must come out. We found out later that the new 'best practices' was to try to leave the pump in and put the appropriate antibiotics direction into the pump. Thus preventing baclofen withdrawal syndrome.
• Ah, yes. Baclofen withdrawal syndrome. No one warned us or told us anything about this. It was never mentioned. It can cause dangerous fluctuations in blood pressure, hallucinations and incoherence, autonomic dysreflexia, and it can disguise infection. Basically, you can easily die from it. D was sent home from the  hospital and within a day was incoherent and having hallucinations, incoherence, and fluctuating blood pressure. One night in particular, his BP was going from the 60/40 range to 240systolic over something I forget now. It just happened to be one of those nights when D had back to back to back visitors. First me, then Jason, and then his dad were all there and were very concerned. It was hard to have a conversation with him. He was short of breath. D's dad (with Jason, who is a nurse, on the phone) made the decision to call 911. I think that if people had not been there and taking his BP, he may have died that night. He was not coherent enough to make good decisions for himself.
• I had these absolutely crazy conversations with him on the phone for two or three days when he would talk a mile a minute and repeat everything multiple times and not really understand what you were saying to him. He got through withdrawal there with the help of Demerol, and came back home in a few days.
• He was much more coherent, but then the pharmacy (yea! for Rite Aid) called and said that the hospital had prescribed two drugs that were dangerously incompatible. The usual uproar ensued and new IV antibiotics were prescribed.
• Weeks went by and the antibiotics were finished but the open incision didn't heal. Goo upon goo was still leaking out of it. Pain management did nothing. Infectious Disease said the case was pain management's job. The wound people at crazy hospital A said it was infectious disease's case. Finally, D went to Hospital B's wound people. They put him on the wound vac.
• And here we are, pseudomonas in the wound and a strip of wound vac dressing discovered. Infectious disease saw him today after he called yesterday and said he was sick. They may have found more wound vac dressing stuck up in the wound. they admitted him to the Burn Center.

Still with me? Probably not, but this is more for me anyway. The thing is, even in this long list of events, I have left out a million little mistakes that were made with medication, communication, wound dressing stuff, treatment plans that contradict other treatment plans. People who don't have much contact with health care are so funny, it's cute. They act like health science is so exact and that mistakes are rare. And if there is a mistake, MALPRACTICE! I'm here to tell you that mistakes happen ALL. THE. TIME. Every single day. And I'm not counting bad outcomes from best guess judgment calls. I'm talking stupid mistakes. Most are unintentional, many are not serious, many are caught in time. But many, many mistakes don't necessarily cause death, but cause very prolonged and debilitating illnesses. I could tell you stories, not just from D, but from my experiences as a patient and worker in the hospital and my dealings with some of my other friends who have chronic conditions that would probably blow. your. mind.

Health care is a mess. An absolute mess. It is systemic. It is often not directly tied to the incompetence of the health care workers themselves, but to the adverse conditions they must work in and the system they must deal with. The thing is, if you don't have to deal with health care very much, you are probably going to be ok. But it severely affects those who have to live in the system. It severely affects the disabled.

With disabled patients, I basically see a few major disaster areas that affect them the most (but also all patients to some extent.)

1. There is this attitude that disabled people don't have lives. That they are devalued and have no quality of life. Doctors are sometimes very laissez faire about D and other disabled people. They don't want to deal with us, they triage us out of their circle of concern. They don't actually think that we are worth fighting as hard for. Sometimes, when I get this attitude from doctors, I have had to tell them, "Look, D is valuable to us. We want him alive and healthy. He has children. He has a father who is devastated anytime he sees D suffer. He has talents and friends and a life worth living. I need him. Very much so. He is not some DNR case we are waiting to be unburdened from. So, I certainly understand that you will be doing everything you can to ensure his well-being." This conversation has really helped in many cases. And every time I have it with  some egotistical neurosurgeon who wants to get rid of D so he can go do Big, Elite, Studly Neurosurgeon things, I find myself incredulous that I actually have to say these things. That I actually have to prove that D is valuable enough for health care.
2. Along with that, there is this attitude that disabled people can't or don't take care of their own health. Many times, a doctor or therapist will prescribe A,B, and C therapies and treatments. And then they tend to give up on you if you haven't complied exactly or they give you attitude about it. They seem to have NO idea that while they said for you to do A,B and C; another doctor said for you to do D,E and F; the PT told you to do G,H, and I: And the RT told you to do J,K, and L, and the nurses told you to do M-Z. Furthermore, C is contraindicated to F and B is a complete contradiction of K. Furthermore, you actually have to eat, sleep, work, and actually have a little free time. There just isn't enough hours in the day to do A-G, much less A-Z. So, since no one helps to prioritize or coordinate these things, we have to pick and choose on our own. Sometimes we may pick and choose the wrong things to prioritize, or we picked the one that contradicted you and that is pissing you off. It isn't that disabled people are necessarily being non-compliant (a word I fucking despise, BTW) it is that you medical people can't get together a coherent plan of care.
3. And along with that, health care workers sometimes don't seem to understand or care about the medical jujitsu (hat tip to Kathryne) that needs to be done to get anything done.  This medical insurance business is absolutely fucking crazy. People seem to think D is at home, leisurely lying around all day, recuperating and living off disability. He actually works ALL DAY LONG just to stay alive and get the health care that he can fight for. That apartment is never peaceful and quite. The phone rings off the hook all day long. Insurance companies wanting this or that. Durable medical equipment companies wanting this or that approval from insurance companies. Doctors offices wanting insurance information. Home health nurses and therapists wanting to schedule this or that. People coming in and out all day long. Mail, insurance forms and medical bills stack up daily. (I told D the other day that we could probably wallpaper the entire Sears Tower with the CMS/Medicare statements that come in.) Phone calls and paperwork he has to do to insure that he keeps his Medicaid, his Tricare, his Medicare and social security, his attendant care. You don't get put on disability and just stay there, you have to prove it again and again at the drop of a hat.  At anytime, any one of the dozen agencies that provide services to D will just decide that he needs to get a billion documents together to prove he is still disabled, still poor, and still under insured. Tax returns, doctors reports, income statements, rent and utility receipts, and whatever else we decide need to be in our office! And they need it in TEN DAYS or you lose all of your services and you will have to reapply, which will take you anywhere from 3 months to five years to get re-approved, and in that time you will not be able to see any doctors, receive nursing or attendant care, or get food stamps...which basically means you will probably die. There are two conversations that I just refuse to have with anyone right now. One is regarding how easy it is to be on disability and how there are a bunch of fakers out there (because it is such a luxurious life!) And the other is anyone who argues against universal, single payer health care. Unless you fight for your life DAILY with insurance bureaucrats whose system have caused you great physical and emotional pain and have regularly taken life saving health care away from you and made you fight for it for months and years on end...then seriously, you better shut the fuck up. You have absolutely no idea what you are talking about. And doctors who opt out of Medicare and Medicaid? Doctors who fight for their own profits and not systems change? Evil greedy bastards. I'm not saying you don't have issues in our system, you do. Like, I think that if the government isn't going to compensate you well for Medicare/aid patients then they should help you out with your student debt and your malpractice insurance. I think we need the system to recruit doctors (and help them succeed) who care about patients and care about justice in health care instead of getting these (many of them privileged) doctors that are in it for status or money. But, fight for us, why don't you. In fighting for us, I think you will also be fighting for yourselves. I certainly have sympathy for the shit practices have to go through in regards to insurance reimbursement and liability issues.
4. The number one thing that has compromised D's health, and many other disabled people's is a complete lack of comprehensive care. For people who have complex health conditions that require many specialties, the care is dangerously fragmented. The left hand doesn't know (or seem to care) what the right hand is doing. There are stupid, arbitrary rules about which nursing agency can do what and take orders from which doctor at what hospital. D will sometimes have three different nurses come in on one day. The wound care nurse, the infusion nurse, and the general nurse. This would be okay if they had special skills in these areas, but they sometimes don't.  We had an infusion nurse with years of experience on the wound vac (believe me, it is a skill), and then a wound nurse who was just starting to be trained on the wound vac. Sometimes, these nurses can't confer with each other because they work for different agencies. There is also a lot of passing the buck to someone else. There is also a terrible amount of just taking care of the acute problem that is right in front of you and completely disregarding the big or long-term picture. Doctors don't want to communicate with each other. They don't want to admit they don't know something and get a consult. They don't want to work as a team because it is more time-consuming. It is very 'treat 'em and street 'em' out there, and that is why there is a huge amount of bounce backs. This is D's fifth time in the hospital for this pump issue. And they are really no where close to a long-term comprehensive solution. Nor are they really interested in finding one. They will get D's vitals stable for the time being, and then they don't care anymore. D and I have hypothetically talked several times about moving to Denver so that we could be close to Craig Hospital, which uses a team approach to patient care. Everyone, doctors, nurses, therapists, patient, caregivers, family members and friends, sit down at least once a week and decide on a plan of care. I know that is a bit harder to do logistically when you are in different buildings in different hospitals, but guess what? There is the phone, fax, conference calling, emailing with cc to everyone. There could be a system where one doctor is in charge and everything goes through her so she can see the big picture and make the final decisions that make the most overall sense. (The Jon-Luc Picard strategy.) TALK TO EACH OTHER, DAMN IT! How hard can it be?
5. Also, actually know about rehab and other services for the disabled. And if you don't, get a good social worker who does and use her. Many times, doctors are the "gatekeepers" into the disability world. Obviously they have to look through the lens of the medical model, but they should at least be aware of the social model. And that there is life after disability. Many times, it is the doctor who says, "This is it. There is nothing more I can do. You now have this permanent disability. Have a nice life" as he slams the door. I'm sure it is hard to call it quits after trying to cure or prevent disease and disability, but after you close the medical door, open the disability community door. It is the only way people with disabilities get their lives back. You as medical people can be very powerful in this regard. You could offer hope instead of just failure. It is a total shame, but I know a ton of blind people who went blind due to diabetes or a head injury or what not. They went through a few surgeries and nothing worked. Then, there was that one appointment with the doctor. They all remember it. It was the one where the doctor said, "This is it. You are disabled." And then they left with nothing. NOTHING. And these blind people would go home and quit their job, sell their house, move back in with their parents or something, and sit. Just sit and do nothing. Sometimes for YEARS. My friend Susan sat for two years before she knew that there was free rehabilitation available. My friend MRY sat for three years before he knew. I knew someone else who sat for 6, before anyone ever offered help. These people can't read the phone book, use the computer, read, nothing. They have no access to information. Their parents are sometimes elderly and unknowing, computer illiterate. How hard would it be to give someone the proper referrals to rehabilitation and advocacy groups? A fucking brochure is what we are  talking about. I think this has gotten better with the internet and people's friends looking up things and trying to help. But you know how most people get services? Social security comes calling, demanding that they prove they can't work and in order to prove that sometimes you are required to go through rehabilitation first. That's all well and good for social security to refer you, but social security can take YEARS to do this. Friends and family should not get a newly disabled person plopped on their doorstep with nothing and have to go searching on their own. Doctors have a responsibility to have knowledge of all the services and options available and a patient should not be dismissed from care until a rehab plan has been locked in. And also, doctors can help by advocating and medicalizing (with insurance companies) rehabilitative care. There are now years long waiting lists in most states for developmental disability services and blind services. There is literally next to nothing available for newly deaf adults. For people with SCI and the like, they are usually rehabbed in hospitals. But there are a variety of options here and patients should be given all the information to make good decisions. There is a world of difference between the rehab results from an SCI patient who goes to Craig Hospital vs. one who goes to, say, Little Town Hospital Rehab Where We Mostly Give Old People A Walker With Tennis Balls on its Feet. Also, SCI rehab hospital stays have gotten ridiculously short. Stays used to average 6 to 9 months. Now SCI patients are getting kicked out in two or three. You can't get rehabbed and recovered in two or three months. And in the long run, it is going to cost the health care system. Poorly rehabbed people have more health problems, require more attendant care, and are hospitalized at greater rates than those that got good, long rehab stays.
6. Finally, it is OK for doctors to not be familiar with something about us as disabled people...on the first visit. I do not expect all of my doctors to know about Stickler's/Alport's syndrome. D does not expect all doctors to instantly know about baclofen withdrawal or autonomic dysreflexia. But after taking a Hx on the first visit....GO LEARN ABOUT IT. Get into your little medical textbooks, go online and read medical journals, talk to your colleagues, whatever it takes. Instead of grandstanding and acting like you know all about it, or being embarrassed that you don't, just go research it already. And at least know something about it in the next visit or two. Also, if you don't know a patient well and are unfamiliar with his case, actually listen to what he is telling you! So if D comes into the ER and says, you can't put me on a regular gurney, I need some kind of air flow mattress, or only Demerol will be effective in regards to my autonomic disreflexia right now, or please use this vein, not that vein because you will have to poke me 80 times and you will end up using this vein anyway...actually listen. Because people with chronic illnesses actually know some stuff. And they are not all trying to get a Demerol hit or make your lives difficult. They are actually trying to make your lives easier. Don't disregard what they say as if it isn't important or you know better...because you probably don't. When a new patient with complex issues comes in, guess who is the expert and knows more about their care? THEY DO! So listen, please. And lose the condescending attitude.

This probably isn't what you had in mind, Bliss, and I'm sorry for being so angry. None of this is directed at you, personally, of course. But I am ANGRY. My kids, again today, had to say goodbye to their father and I can't tell them when they will see him again. And I get scares sometimes that the answer will be never. And I know that D is a complicated case, but some of these things are just so utterly dumb that I can't hardly stand being in my skin when I think about them. A person like D has enough unpredictability from his body itself. It would be nice if he also didn't have to deal with the antagonizing unpredictability of ignorant and incompetent staff, corrupt and exploitive insurance companies, and a system that basically would rather see him dead.

Can I Just Have this Made Into a T-Shirt and Call it a Day?

*Standard disclaimer: The "you" in the following is no one single person, it is a figurative "you" based on a lifetime of dealing with "yous". If you are a regular commenter on this blog, it certainly isn't "you." None of "you" have done anything to fit this profile.

Can I just say this once and for all and never have to say it again? Could that ever be possible?

If you are going to call me remarkable, amazing, inspiring, or whatever other adjectives you want to use to put me on a pedestal...it better not be because I am disabled, or because I partner with someone who is disabled. It better be because I have won an Olympic Gold Medal or a Nobel Peace Prize or a Pulitzer or because I have brokered a treaty between waring nations or because I can tie a cherry stem with my tongue or because I have actually DONE something remarkable. And "coping" with disability DOES NOT COUNT. I didn't do anything to be disabled, I was given this gift.

And if you are going to feel sorry for me or feel pity or whatnot, it better be because my dog died or my house burnt down or my family member died. It better not be because I am disabled or because D is disabled. Or because we 'cope' or because we deal with a bunch of health shit. This is WHO WE ARE. We didn't do anything to be disabled, we were given this gift.

The inspire or pity paradigm serves only one purpose, to make us "other" and unequal to you. Either as lower on the totem pole (pity) or as on some unreachable pedestal (inspirational.) Do you know what this is all about? Do you know why you do this? It isn't about us. It has nothing to do with us. It is about you. Your fears of sickness and mortality. Your fears of your own inadequacy. Your fears about losing your own power. Your fears that you can't handle it. It being whatever you are having trouble handling. Do not pity us and think you are being understanding. Do not feel inspired by us and think you are being complimentary. In both cases, you are seeing us as less than human and as unequal to you.

And please, please, please, oh pretty please stop talking cure to us as if it is your merry way to be uplifting and to give us "hope." Guess what? I don't want to be cured. D doesn't want to be cured. I mean, sure ...in many ways it would make life much more convenient. In some instances we seek medical intervention to improve our physical functioning and health. And sometimes it crosses our minds in the same way winning the lottery, or driving in the Indy 500 or climbing Mt. Everest, or being a Victoria's Secret Model or whatever the silly pipe dream is that might cross yours. It is not the be all and end all of our lives. It is not the goal we strive for. Your talk of cure is also more about you than us. You want us to be more like you. Like a person you can be comfortable with. Like a person you don't have to consider when thinking about the rules of fair play. Like a person who had a deficit, a problem and now it is conveniently solved. Your issues around dignity, the kind of dignity that apparently you earn by going to the bathroom in the right way or being able to walk in the right way, of being too "proud" to be "a burden" --those are your definitions--not ours. We have a different idea of what dignity is. It has more to do with honesty, integrity, doing your best, being a loving person, sharing with others, than how we wipe our butts or get through a doorway we can't see.

When I think about what my life would be like if I were not disabled, it is very hard to even grasp the concept. And I'll tell you what it feels like when I do. It feels like loss. It feels like something good and intriguing and rewarding would be gone. If I think of myself as not disabled, not ever having been disabled...would I be like you? The able bodied person calling me pitiful or inspirational to make himself feel better? The person who is all into superficiality and shallowness and is so irritatingly uncreative and unresourceful? Would I not know the true value of life? Would I go blissfully on my way thinking I was immortal and invincible? Would I go through life blatantly denying the fact that I don't have control over everything?

And if we were all cured tomorrow, if there were no disabled people anymore, it feels like a loss to the world. No one would have to think about diversity. Sure there is race and cultural diversity, but they don't require people to necessarily reevaluate everything they know about the value of life and what it means. Who should live and who should die. Or how far we are willing to sacrifice ourselves to offer someone else a chance at a decent life. Where would the innovation be? Where would the resourcefulness go? What would happen in a world with no need for creative solutions or alternative methods or new inventions? Sure it would be there to an extent, but not as deeply rooted as it is now in a world where 5 out of 6 people will experience disability in their lifetime. The world needs us. They are just in denial. I think it would be kind of cool to be cured for a week, just for the novelty of the experience. But, no, I don't want to be cured. I don't know that D does either particularly, although he might grab at being pain-free.

Like everything else in life, disability has two sides to it. The one where it is a hassle, and the one where it is a gift. Even winning the lottery is a hassle if you've lost your ability to know who your friends are because many of them are clamoring for your money. When you are disabled, it is relatively easy to tell who your friends are. Instead of thinking of me or D or other disabled people when you need to feel fortunate and grateful about your life, try thinking about some people who might really need your help. D and I are fine. We are not here to service your self concept about your own lot in life. Instead, you might want to think of people who really could use your help and some of your good fortune. Genocide victims in Darfur. Child-slave labor in the third world. Homeless single mothers and their children in battered women's shelters. Disabled inmates who are trapped in (many times very abusive) residential facilities.

And if you really want to help us, then treat us as humans who are your equals. As people who can give help as well as receive. Get to know us instead of popping around during the "hospitalizations" or the times when we are lugging around medical equipment. Befriend us full-time, not just when it makes you feel better about yourself.

Being disabled sucks sometimes, sure. (Mostly due to external social justice/health care factors rather than the physical impairment itself.) But it is part of who I am. It isn't everything. It isn't the most important thing, most of the time. But it isn't invisible or some burden that I drag around like a ball and chain just praying for an opportunity to chop off. Believe it or not, I don't hate my eyes, or my ears. D doesn't curse his legs. My ears have big silver BTE hearing aids coming out of them. My eyes are asymmetrical and scarred after so many surgeries. My face is puffy from kidney dysfunction. D's legs are atrophied and often swollen and well, one is in fact missing. We do not feel ugly. We do not feel shameful. We do not feel like those parts should be hidden. This is what it means to be human, finding your soul within and beyond your body. Within and beyond these physical parts in all of their stages of wear and tear and disrepair. We have an affection for them and the rich opportunities they've brought us. They are part of us, as weird as it may sound--a part that we love.

Little "reverse" discrimination for ya.

Reader Haben Girma tipped me off quite a while ago about this video produced by the UK Disability Rights Commission. I just finally got around to finding it, though. It's funny and rings very, very true. YouTube cuts it into two parts, each about 5 minutes each.

Part 1:

Part 2:

I've Got Me Two Three Year-Olds.....So Take THAT, Bitches!

First of all, thanks for all of your comments on the TMI post. I'm thinking about pursuing the Mirena option, although it squicks me out a bit. But I've done some research and as they say, "It's not my mother's IUD." I'll let you know how it goes.

And yeah! The kids are three! Holy Crap how did that happen. We had a nice day at a local pizza place with an indoor hamster cage playroom. D's dad came with us and we had an unplanned meeting with a friend of ours and her little boy, so that was fun. The kids made birthday cake with me and we had cake with D's dad. We gave them each one small present (little airplanes) and a present to share (a doctors kit.) And that was it. (Party in the summer.) Pictures are on D's camera, so I'll put them up when I get them.

Three years old is a big milestone for me because I feel like I can breathe a sigh of relief about my paranoia that they would be removed from my care. I know this is quite arbitrary. It is based entirely on a comment that was made while I was in the hospital with them. But this comment ran over and over in my head and I would imagine myself as a mother of three year-olds. Where we would be and how we would get there. It seemed so very far away back then, like centuries away. But it came so quickly! And its here and we did it and no one can say we didn't or couldn't. So, okay, here is the letter I've been thinking about writing for three years. But couldn't write it until the kids were three, as you soon will see why. I might have to do some edits and shorten it up of course, but I'm pretty sure I'm going to send it. So here is the letter to the maternity ward director where the kids were born. And crap, I can't figure out the formatting. Sorry, folks. It seems to happen every time I Xed something out

December 8, 2007

Dear XXXXX,

I was a patient on the maternity floor of

XXXXX

Hospital

three years ago from December 7-12, 2004. I gave birth via C/S on the 7th to 35 weeker twin boys named Naim and Aaron. Perinatologist Dr. XXXX was my attending physician and the children were seen by pediatricians from The XXXX Clinic. Dr. XXXX is their current pediatrician. I am vision and hearing impaired, and the babies’ father, D XXXX, is a C6 quadriplegic. We stayed in

Suite

30

, if I remember correctly.

I am writing this letter because of several comments that were made by your staff concerning our ability to parent our children. Most notably, a comment overheard by a friend of mine as she waited in the hallway near the nurses station in which a staff member said that even if my partner and I managed to care for our babies the first month, they would definitely be taken from us by the time they were three.

This was not the only comment made in regards to our ability to successfully parent our children. A CNA (who referred to us as ‘welfare cases’) told a pediatrician right in front of us that the ‘word on the floor’ was that if left alone to us, our children would not be fed and cared for. We also were told by a lactation consultant that I did not have what it takes to breastfeed and should probably give up my pumping and feeding schedule. There were other slights and judgments made in regards to our ability to parent as disabled people.

This was extremely distressing for us during a time when we were in need of support. I had just had a retinal detachment and lost most of my remaining vision 3 weeks prior to the birth and had had a difficult eye surgery and bed rest leading up to the birth. My children, particularly Naim (Twin #1), were going through the usual problems that many premature babies go through, such as jaundice, low glucose levels, and a lack of a good sucking and rooting reflex. I was also recovering from a C/S and could not find a level of pain medication that didn’t make me extremely drowsy. I was not at my best, and I took the advice of our childbirth class instructor, who told me to use the hospital stay as much as possible to rest and recover. She suggested that I put the babies in the nursery at night and to not be shy about asking for the nursing staff to assist with their care while I was there. This is advice that sounded reasonable to me, yet apparently backfired.

I feel that the preconceived notions regarding the abilities of people with disabilities caused us to be unfairly judged and thus perhaps led staff to make decisions that were not in our children’s best interest. For example, other premature infants without a developed rooting and sucking reflex are often treated with an NG tube until their ability to eat on their own develops more fully. Perhaps this was a judgment call that could have gone either way. But in the four to six weeks following his birth, Naim was seen several times by a WIC dietician and nurse, a XXXX

County

outreach nurse, and the feeding clinic at XXXX. None of them could get him to eat any better than we could. We tried different nipples such as the Haberman, we tried different techniques and positions and schedules. Nothing worked. We ended up just dripping drops into his mouth, birdlike, for the first month. Finally, near his original due date, he just suddenly developed a sucking reflex. My point is that in any other situation, a baby like Naim would have been treated as he was; a premature infant with eating difficulties. Instead, some of your staff blamed his problems on us, on our inability to feed him due to our disabilities. I think that these types of judgments can potentially be harmful to patient care.

The other way these judgments and prejudices were harmful to me was the stress and fear they induced when I had to hear such comments. I did not know how far this would spiral out of control. Every time the door opened, I wondered if some social worker was going to come and take my children away. I was not able to rest and recuperate in the hospital; I was put on the defensive. One reason I did not accept hardly any pain medication was because I did not want to be mentally compromised if I had to fight for my right to keep my children. I cannot even describe to you the insult added to injury that the words of your staff caused my partner and I. We literally became fearful of some of the staff and watched our every move, making sure that we did not ask for or accept much help. We knew our every move was being scrutinized. This was not conducive to a recuperative stay for any of us.

I would like to take a few minutes now to tell us a bit about our family, and perhaps dispel any misconceptions you may have about us. I have a master’s degree in education and have taught school as well as worked at XXXXXX and XXXXX Children’s Hospital as a research associate and a child life therapy assistant. My partner Dwight and I met in college. His education is in computer engineering and he worked as a software developer at Hewlett Packard and now sells software for XXXX. We have been together for 13 years now. We are not married due to health insurance issues. He relies heavily on TriCare, military insurance he gets through his father’s service in the Marine Corps. If we married, he would lose this much needed secondary insurance. At the time of my pregnancy, I had recently changed jobs and was not able to have my pregnancy covered by my COBRA BCBS insurance due to the preexisting condition clause. I also receive Medicare through a disabled work program. I currently work as a CNA and as a writer for a disability education organization. Because of the job change, my pregnancy and our children’s first year of medical care was covered by Medicaid, which I paid a premium for. I imagine that this is why we were thought to be “welfare cases.” The children and I are now covered by a BCBS plan. We have a modest income, but we do work and we do meet the financial needs of our family. Regardless of this, I would hope that anyone who finds themselves utilizing Medicaid or other financial assistance could count on being treated in the hospital without judgment or rude comments.

As with any new parents of twins who had some eating and health issues, the first 3 months or so were tough, but slowly the kids got over their health issues and gained weight and began to thrive. We have occasional help from family, friends, and babysitters like everyone else, but we largely take care of our children entirely on our own. I developed a method for using a white cane while pulling the kids behind me in their double stroller. I learned to gauge diaper rash I couldn’t see by how they reacted when I cleaned their bottoms. I hooked up my hearing aid FM system to a baby monitor that would signal me when they would cry. DXXX developed ways to hold them and feed them by propping them on pillows. He could pick them up from the floor by using a transfer belt or just sticking his arm in the back of their overalls. We both developed ways to keep track of them at the playground using bells and lighted shoes and by starting small and setting clear boundaries while slowly expanding their world. Instead of sitting on the park bench watching them, I got to have the fun of following them up and down the playground slides as my way to keep track of them. There really has yet to be any parenting challenge that we haven’t effectively met.

They just turned three yesterday. And we still have them and have never been even close to having anyone threaten to remove them from our care. We have purposefully taken advantage of such programs as Healthy Start and the Washington County Public Health outreach program in order to have ‘witnesses’ that would vouch for us if there was ever a problem. These professionals have been in our home on a monthly basis for three years, and their time is coming to a close. We have always received complements on our parenting skills and how well the children are doing.

And they are doing wonderfully. They are healthy and well within normal range on the growth charts. They have met or exceeded all of their developmental milestones. They have learned both sign language and English and have that wonderfully hilarious vocabulary that three year-olds are known for. They enjoy trips to the park, the Children’s Museum, the Zoo, Church activities, and outings with other children. They enjoy traveling with me on the MAX and buses and are learning the rules for crossing the street (which in our case means they are learning traffic rules and patterns and the sounds of the intersection as well as red/green lights.) They will be starting preschool in the fall. They have no problem relating to our disabilities because it doesn’t seem like anything is different to them and I think this helps them to relate to others with differences. They are a joy to be around and they are the best decision I have ever made. They are the light of our lives.

I hope that by sharing our story with you, that you may look at the attitudes and prejudices that may be impeding on your staff’s ability to give the best quality of care to all of your patients regardless of their life circumstances. I want nothing more than to make you think twice the next time you have a disabled mom or dad in your care or anyone who may be struggling with a unique situation. And I want whoever said our children would be taken from us before they were three to know that they most certainly were NOT. There was never any reason to think that they would be.

I would also like to say that we do know that not every staff member felt the way that these ignorant people did. We did have wonderful nurses that seemed to go to bat for us. It almost seemed like there was a bit of a divide among your staff. We sensed a lot of ‘office politics’ going on that week that we might have been in the middle of. I wish I could remember all the names of everyone who was so kind to us. We were given the biggest suite and DXXX was accommodated with his own egg-crated hospital bed, which helped ease his stay with me. We had a wonderful nurse that helped me check out on the last day and gave me a hug and lots of encouragement. We had a nurse that was with us for the day shift for about three days and a night nurse that was very helpful. Now that I think about it, it seemed like the nurses that spent the most time with us were generally supportive, while those who only saw us briefly had the biggest misconceptions about us and caused the most stress. I think that proves that when people take the time to know us as who we are, not who they think disabled people are like; they don’t have any problem with us. Again, my point in all this is to encourage your staff to look at their prejudices and to share with you how much fear and stress it caused us to be judged in such a misguided way. No new mother (who has done nothing wrong and shown no sign of being unfit) should have to recover from a Cesarean and get to know and care for her preemie twins while being terrified that they will get taken away. That was nothing less than a nightmare.

Thank you for taking the time to consider my situation. I hope it helps you better serve future patients.

Sincerely,

Lisa XXXXX

A Reader Asks: Why the Herds?

Note: I have had much computer/internet connectivity the past week and a half or so. I’m sure it has absolutely NOTHING to do with the fact that my father has gone crazy trying to get his wireless to work by screwing around with my router as if he knows what he is doing. Anyway, he leaves tomorrow and I think we are back online. I owe a few of you emails and I haven’t forgotten.

So,

Shannon

writes:

I have a disability-related question for your blogging calendar: