The Bones My Family Gave Me

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This is for the next disability blog carnival. One of the questions asked is “Is there someone whom you have met in real life or online who has had an impact on how you view your disability or disabled people in general?” This is my answer.


How do I even articulate the ways my family shaped my views on disability? It’s a very mixed bag. And in saying what I’m about to say, I do not want to give the impression that my family is some kind of romanticized disability utopia. Far from it. There is plenty of misunderstanding, prejudice, and ableism to go around, just like in most families. Yet in being who they are, my family taught me a lot about disability without even knowing, without even trying. They taught me even despite the words that would sometimes come out of their mouths and the prejudice that led one family member to not allow me near his children unsupervised because I lived in a residential facility. There was something deeper going on underneath that even that kind of behavior could not fully eliminate or obscure. And since I generally see things like this from underneath, I learned lessons that nobody tried to teach me.

Most people in my immediate and extended family experience disability in some way. Whether it goes by the common classifications of developmental disability, psychiatric disability, chronic illness, physical disability, cognitive disability, or things that blur all these artificial lines, these things are practically everywhere in my family. I’m not exaggerating. I hate having to fill out forms in doctor’s offices about family history. I end up having to circle practically everything, and write in a lot of extras.

On the surface, various family members may either accept or reject the views society places on disability, and in many different ways. But underneath… underneath is where it gets really interesting.

Because the biggest message I got from my family, without any of them ever trying to send such a message, is that disability is inseparable from the human condition, from life itself. I look at us as a whole and I see an amazing landscape of human variation. I don’t see defective people. I don’t see people who never should have been born. I don’t see unpersons. I don’t see empty shells. I don’t see burdens on society and on each other. I just see people.

I was trying to explain all this to my father when he visited recently. It’s really hard to put into words. I brought up the people I’ve known who are the only disabled people in their families. I would never want to put up with the bullshit that some of them have to put up with. Not that my family doesn’t have its own brands of bullshit, but still. At least I can look underneath the bullshit and see that ever-changing landscape of people who are in similar positions to me.

They may or may not think about it the same as I do, but it’s not their thoughts that gives me an advantage. It’s their being. It’s who they are. It’s who all of us are, in relation to each other. Some things are deeper than words, deeper than thoughts. They make their way into the core of your being and connect you to your roots. Nobody can break these connections, not even if they want to. They transcend hatred, prejudice, bullshit, and all the other things that can tear us apart on other levels.

This means I was never prepared for the level of contempt for our very existence that exists in mainstream American thinking. That contempt is hidden behind discussions of how horrible and traumatic it is to have a disabled family member. I could never get into support groups for children of disabled parents, siblings of disabled people, and so forth. Because so much of what they say is all about the “normal life” they wish they had had. And they have all this resentment for the position they’re in.

I hear people say things like “I didn’t get to have a childhood because my mother was disabled” and I want to shake them and ask “What do you think ‘a childhood’ is supposed to be!?!?” But I know what it’s supposed to be. It’s supposed to be an entire world without people like me in it. We’re always described as barriers to the normal lives that people around us deserve. I can’t get on board with that. I can’t even fathom how that is considered a good thing.

Seeing how the rest of the society we live in viewed people like us was almost like a kind of culture shock. Even the worst of the disability prejudice within the family was nothing compared to what I found outside of it. Reading about the way the eugenics movement targeted families much like mine, in terms of disability, class, and race (during that era many of us were visibly mixed-race), makes me glad we escaped that fate, and horrified for those who didn’t. Of course, eugenics did play a part in the struggle my great aunt with an intellectual disability had in getting married to a man with a similar condition. But we were never systematically targeted as a whole.

Still, to this day the remnants of eugenics seem to be everywhere. There are people who think it ought to be illegal for anyone with genetic conditions to have children. Or that it’s a mother’s duty to abort a fetus found to be disabled. And that if people disobey this, then their children ought not to benefit from any kind of disability services from the government. What that tells me, is that people don’t want me to exist. They don’t want my family to exist. Any of us. They would rather none of us had been born.

I have trouble having those conversations. I have trouble believing anyone should be in the position of having to argue for their own existence. And people saying these things usually believe they’re being totally sensible and not acting from hatred and naked bigotry. They say my emotional reactions mean I can’t think clearly on the matter. If what they do is thinking clearly then I want no part of it. I can’t describe the pain, or the rage.

My mother once wrote to me. She had been reading things by other parents of autistic children. They said that all parents of autistic children think about killing their child at some point, and that parents who say they haven’t ever thought that even once, are lying. They said that no parent would deliberately have a child if they knew their child might be autistic. My mother told me that doctors had suggested she abort me before I was born. That she didn’t listen. That she’d always wanted me. That she wanted me to know that they had never, ever, not wanted me to exist. That knowing I would be autistic would not have changed anything. I cried. I cried because these people had made her feel like she needed to tell me that. I can’t imagine how that felt for her. I can’t think of it now and not cry.

A lot of people in mainstream American society seem to believe that they have some kind of absolute right for us not to exist in their lives at all. That it is only natural that we be taken out of our families and put into group homes, mental institutions, nursing homes, and the like. That it is only natural for us to be taken out of school and put into segregated special education classes or schools. That we be put onto government programs that are run in such a way as to make us an underclass below people who actually work for a living.

I never understood these “rights”.

When I was in special ed, I noticed something. I noticed that a lot of us had been taken out of traditional classrooms, because of excuses like “It would be too hard for the teacher to teach all of these different kinds of people,” or “These people are a distraction to the regular students and impede their learning.” And yet… here we were, in classes, together. When they bothered teaching anything useful at all, teachers had to accommodate our various ways of learning. We had to learn to concentrate in classes together with people who were supposedly too distracting to be in regular classes. We were people who supposedly struggled to learn or socialize the same way other people did. Nondisabled children were supposed to be really good at these things. If we could handle it, why couldn’t they? It didn’t make sense.

The reality was, that those weren’t the real reasons we were in segregated classes. We were in segregated classes because nondisabled people felt they had the right to learn without us present. They felt they had the right to a world without us in it, with us shunted off to the side somewhere where they didn’t have to bother getting used to our presence.

Mind you — I don’t believe in traditional school. I believe it’s just another form of institution, with the power structures that lead to bad things. I believe it’s unnatural to separate people out by age and expect them to learn socialization from people as immature and inexperienced with it as they are. Because it’s considered normal, few people in mainstream USA think of this, and many are outraged when I say such things. But I know how damaging school is to the minds and souls of the people who attend it, even if many people deny that this happens.

So I am not saying that I wish everyone was in regular school. (Nor am I saying the thing some “inclusion” advocates say, that it’s bad for disabled people to be together because we might catch disabled cooties and they want us to learn to be more like nondisabled people.) I wish nobody was in regular school. I wish learning happened instead, in ways that most people cannot even imagine. But nonetheless, I dislike the fact that nondisabled people in regular schools think they have the right for us not to be present with them. That’s just messed up.

But what I said about how things ought to be done in a way most people cannot even imagine? I don’t just think that about school. I think that about the entire way our society deals with disability. I want everyone to be able to see that vast landscape of human variation that I see when I look at all people, disabled and nondisabled. I want people not to see us as defective, as people who ought never to have existed in the first place. I want people to see our problems as just part of the human condition, just like everyone else’s problems, not something specially and uniquely horrible.

And I get that mentality from my family. They didn’t necessarily try to give me that mentality. But they succeeded anyway. They showed me who they are, who I am, who we are, down as deep as it goes.

I have a story that’s been writing itself in my head for a long time.

Pre-Raphaelite painting of a nymph looking through the trees at a man lying on the ground

A disabled girl seeks out the nymph-like beings who make up the trees and the rocks and the landscape in her world. She expects them to look like the nymphs in pre-Raphaelite paintings. Instead, to her shock, they have the same level of diversity that humanity has. They come in all sizes, colors, and body types. Including many that are disabled. Including some who look just like her. When she sees the ones who look the most like her, she is shocked. And repelled. And she runs away in terror, and goes home and cries. She can’t get the image out of her head. She was looking for what she considered “better” than her, and instead she finds she’s almost looking into a mirror. But eventually she learns, that just like the trees and the rocks and the ground come in all different types, so do people. That trees, rocks, and ground don’t mind this. That people shouldn’t either. That there’s nothing horrible and unnatural and wrong and shouldn’t-exist about the way she’s been built. And then she cries for an entirely different reason.

Photo of part of an oak tree.  The bark is light grey, and there's a huge chunk of bark missing, revealing dark brown underneath.  Inside the crack are silvery spider webs, leaves of many different colors, twigs, and a lot of other interesting details.

That’s how I see disabled people. And that’s what my family taught me, willingly or not. I may have been getting messages from society ever since I can remember that there was something terribly wrong with me. (One of the first conversations I remember between my mother and a stranger involved a stranger asking her what was wrong with me.) But… I was also getting that deep down underneath message that all kinds of people exist in the world and had a place in it, disabled or not. That both the good and inconvenient parts of disability were just part of what goes on in life, not something jarringly different from “real” life.

My most basic views on disability don’t come from ideology. They don’t come from buzzwords like neurodiversity or social justice, or the movements and ideologies surrounding those terms. They aren’t specific to autism and don’t come from the autistic community. They come from deep down in my bones, the bones my family gave me.

About Mel Baggs

Hufflepuff. Came from the redwoods. Crochet or otherwise create constantly and compulsively. Write poetry and paint when I can. Physically and cognitively disabled. Anything you hear in the media or gossip is likely to be oversimplified at best and wildly inaccurate at worst, the only way to get to know me is to actually know me. I'm not really part of any online faction or another, even ones that claim me as a member. The thing in the world most important to me is having love and compassion for other people, although I don't always measure up to my own standards there by a longshot. And individual specific actions and situations and contexts matter a lot more to me than broadly-spoken abstract words and ideas about a topic. My father died a couple years ago and that has changed my life a lot in ways that are still evolving, but I wear a lot of his clothes and hats every day since he died and have shown no sign of stopping soon.

9 responses »

  1. “Mind you — I don’t believe in traditional school. I believe it’s just another form of institution, with the power structures that lead to bad things.”

    I think this has actually been becoming more true in the last 20 years or so in the US, in that the school system has responded to its problems by becoming even more institutional.

    I know that when my sister went to my high school (before me) there was one time that the students protested something that the administration was doing by all getting together and eating lunch in the lobby. They could do this because they were allowed eat lunch in various places and some people who lived nearby even went home to eat lunch.

    This was something that had lived on in the student lore by the time I was there, but the administration mentioned it to us from the standpoint of “It was okay for them to eat lunch there, but it wasn’t okay when some of them stayed after lunch break instead of going to their classes. And now you’re required to eat lunch in the cafeterias, so you can’t even do that.” So here there’s this weird idea that the school administration can dictate terms of protest to the school administration and it still be meaningful, but there was also increasing regimentation of our lives during the “school day.” Now we had to be exactly where they wanted us throughout the entire school day and we could never leave until we finished our last class.

    The cafeteria was a really bad environment for me mostly because of the noise, so I spent a lot of time hiding from that. The band director had let a few of us eat in the band room, but when the administration figured out he wasn’t always there during this they made us go back to the cafeteria. At this point, I usually spent lunch in a bathroom stall (eating wasn’t really on the table). Eventually someone found me THERE and I had to stop doing that.

    The person who found me was actually someone who worked in special ed who was trying to make someone didn’t want to go into the cafeteria go into the cafeteria, while the guy in special ed wanted to hide in the bathroom. So I just said “I don’t like it there either but it’s okay I can go there” and from then on I only hid in the bathroom when I thought it was absolutely necessary. Sometimes the special ed guy would see me, smile in a patronizing/scary way, and ask me how I was doing or if I needed anything, which I hated. I didn’t want anything to do with special education.

    People REALLY shouldn’t have to go through stuff like that. I’m sure there’s some kind of highly bureaucratic way to offer a quieter eating environment to people who need it, but you could also just, you know, let people eat where they want as long as they’re not causing problems.

    “I hear people say things like ‘I didn’t get to have a childhood because my mother was disabled’ and I want to shake them and ask ‘What do you think ‘a childhood’ is supposed to be!?!?’ ”

    More than this, I have had the problem where the “life stages” didn’t have much to do with me, my needs, or what I enjoyed. I’ve always had the sense that people were taking out there own insecurities on me by telling me to do things they wish they could do or had done, without checking to see if those things were actually good for me. But this is obviously a way smaller issue compared to being portrayed as mainly a burden. It’s kind of relevant, though, because one of those supposedly horrible horrible mistakes I made was graduating high school early and I’ve never regretted that (I also didn’t go to prom).

  2. I almost hesitate to write this. I know well it will be too long a response…and it might well be off true topic because I have a tendency to do that, but it is what comes to mind after reading your post.

    I always have felt strongly that we all come into this world with gifts ….physical or mental or societal circumstances that make learning or doing certain things extremely easy for us….rather that be an intellectual gift or one of a different type like a profoundly big and giving nature or a way of portraying emotion or just our ability to observe and observe some more before we step in and join an activity, and we come with deficits or areas that we find harder to learn or master which if the society we are in thinks makes it harder for us to to routine tasks is called an actual disability. It doesn’t make us any better or worse then anyone else to have these gifts or deficits as it doesn’t affect the core of our humanness . We are all just people in this human condition and I have seen the best of things happen when we are not compared to anyone else but allowed to develop and move forward at our own paces.

    Competition isn’t all it is cracked up to be.

    Prejudice comes in strange places. [Embarrassing childhood story deleted. :) ] I felt a bit enraged that our society puts these arbitrary fences around children….learn this now and that later….That was when I first told you that if you are three and you want to learn algebra then that is your time to do it….and if you are 99 and you want to learn algebra then that is your time to do it. Neither should anyone be made to feel bad about about their time being too early or too late. It is just their time…nothing more or less. It doesn’t change who they are as people.

    I saw the most beautiful classroom once. I hear some schools are trying it now decades later in a better way with no actual age designations involved. It was your oldest brother’s class in first grade. The teacher, had devised a way where she tested every child in every subject and rather then teaching a formal class let every child proceed at their own pace. In addition, where they excelled they taught others…and where they had problems they were tutored by others. So everyone was a teacher to some and a student of others….and that is incredibly liberating and teaches a huge life lesson of acceptance. We are all good at some things and not so good at others and it doesn’t matter as long as we can all feel comfortable in our own skin and proceed as we are able and get help where neeeded.

    Your brother like you was spontaneously reading at an early age. I didn’t even know there was a name for this or that it might be part of something bigger. He just read “Milk” off a truck when 18 months old spontaneously and by the time he was three was taking Time magazine to bed. We didn’t think too much of it past getting him the books he wanted and seemed to like to devour. So he made a film in first grade to help others learn to read. His penmanship was illegible so someone who was good at that in his class tutored him and he had to work hard at it. We didn’t think too much about that either…or the fact one of your brother’s found spelling hard but could assemble and disassemble a bicycle the first time he got one. Such mechanical ability was a plus to all of us. We told him about people who couldn’t spell who later ran corporations and used spell check. Getting past those teachers who put such stock in it and graded papers accordingly was the hard part.

    Sometimes too things that others don’t see as strengths really can be in some circumstances. It is good that we have differences as it makes us all stronger. If we were all the same and without diversity we would be up a creek without a paddle. I used to take care of children part time before you were born. I had a boy I took care of who needed to stay in my arms for quite a length of time observing the small group of children playing in our yard before actually joining in, first on the edges, and only gradually engaging. I remember his grandfather telling me he worried about this as he felt his grandson should jump in feet first and join the fray. I remember telling the grandfather that I thought his grandson had a special gift of observation. He would watch so carefully this and that and notice things that others did not. I lost track of that little boy and his family over the years but as some do I googled his name some time back wondering what he had done later in life. It turns out he became the bureau chief for a major newspaper and it had been his job to go into warring foreign countries before his staff and observe and prepare so they could be safe while covering stories often in quite dangerous circumstances. Part of me rejoiced in that he had put that gift of observation to work and never believed anyone that tried to tell him being hesitant to join in was a deficit. In this case it saved lives. Sometimes gifts are not recognized as such and an environment that celebrates diversity is a positive force.

    I remember a conversation you had with a friend. He was saying that he could not cook for himself, was totally unable to prepare food or remember when to eat but could fix practically any computer problem that came up and could fix a car. In our society he was considered disabled but someone else who could not fix a car or a computer were not considered disabled because they could cook and remember to eat. I know that eating is vital. That is the distinction. But so is transportation and communication and while as a society we need to make sure that people who cannot cook their food or remember to eat have those around them to do this….we need to understand that everyone has something to contribute…something they need help with. This is just such a simple concept. I need computer help and car mechanics. We all need each other’s help at some time.

    I know that I find spatial things very difficult. If I go in a door to a store and come out a different door I can’t find my car. I get lost in places others don’t. I have always been like this. I have now identified a lot of people like me who function well in many other areas but find navigating this spatial world is laboriously hard. I have relied on you and other members of our immediate family all your lives to help me with this. No one made fun of me. They just stepped in when needed and helped me do what I needed or wanted to do. You went with me on my first trip driving in S.F. because both you and your brother knew if I didn’t have a navigator I may not come home. You were not much more then five and had a phenomenal ability to find your way about the planet that I needed to rely upon. When you wanted to go to Pennsylvania several years back, and we rented a wheelchair van and I came back to drive you through three states to your destination, your father got on the internet and took a satellite picture of every stop light we would encounter on the entire trip. Then he did it backwards since I can’t directionally transpose. I had two books of pages to rely on for that journey. No one told me not to go….I just got a lot of help along the way. It was an incredible experience I am so glad I got to have…but would not have been able to manage without help and someone understanding where the hurdles would be for me. Yes I can drive but……

    I always felt accepted in our core family and my areas of non-expertise were accepted matter of factly and I was encouraged to progress in areas that interested me. I was allowed to teach and to be tutored. I have never felt that because I was a parent I had to have all the answers or could not learn from my children …and you know well I did not have all the answers and often glaringly so. I can remember questions coming early on where we had to look for the answers and sometimes could not find them. So when learning physical things were hard for one of your brothers we found a swim center that taught swimming one-on-one and a woman with a knack for teaching horseback riding to people with physical disabilities. We soon found he was a strong swimmer and had a natural ability on horseback. It was the original group method of instruction that had gotten in his way. It wasn’t that he couldn’t learn he just needed a different method of teaching.
    this comes with the sensory integration disorder he has. Kind of like I could drive to Pennsylvania with the right support. Kind of like someone who holds back and observes getting his entire staff out of a warring country alive. Kind of like that.

    I wanted to say one more thing about gifts. I remember a day at work where everything had been a challenge. There had been many emergencies, and completing a schedule was not easy. Besides that I had encountered a lot of people that day who were stressed over one thing or another. I walked into a room near the end of the day to work with a woman who was a quadraplegic. When I first came into the room the woman gave me the biggest smile. I literally basked in that smile….took the light from it and let it penetrate my entire being. I told her right then and there that she was the first person in my day to smile at me and it was just what I needed at that moment and I thanked her. She gave me a gift that I really needed and helped me stop and regroup. I was there to help her but she was helping me without even realizing how much her attitude had meant. Not that everyone has to smile….but sometimes a gift just falls on your lap and you take it and appreciate it beyond words. The time I spent with her was renewing. Gifts are not always something tangible or costly. Sometimes a gift is another view of life someone gives us in a written word or a picture or an interaction or an emotion. Everyone gives and everyone has something to give. Everyone takes and we all need to ask for help at times. Never underestimate the effect you have on others. Exclusion cheats us all and diversity will always be our saving grace.

  3. I can’t think of any words right now to use to reply, and even if I could I don’t think they would fit… sometimes words just don’t exist/don’t always work. But I wanted to thank you for this. I have tears in my eyes, and I can’t tell if they’re totally from the various small anguishes reading this brings up, or if they’re from feeling… I don’t know… acknowledged? Like maybe who I am is not defective, which is the way I always see myself as?

    Anyway, thank you.

  4. Hello Amanda,

    I stumbled across your blog the other day while looking for something (information about living within the autistic-spectrum and also something akin to answers to unanswerable questions about my own existence; the kind of thing that I suppose all human beings – and maybe others too – struggle with on some level or other). You have an amazing talent to communicate, made all the more amazing by the barriers you climb each time to do so using ‘traditional’ means, like written language. When I read the words you write, it seems that they transport me into a parallel place in my own mind that resonates with what you are describing. But beyond that, you show great and deep insight. I’m still learn how to purge myself of those feelings on shouldn’t-exist and reading your writing is hugely helpful. Thank you for this tremendous gift.

    Wishing you all the best,
    Andrea

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