withasmoothroundstone:

I remember how much you dreaded growing up.  It wasn’t that you liked being a child.  You hated being a child.  You vowed from an early age to always remember how miserable childhood could be.  I remember this well, because I was you.

But I also remember your increasing terror of what adulthood would bring.  At first, you took it for granted that as you grew older, you would acquire the skills necessary to do everything adults are expected to do in our society.  But the closer you grew to adulthood, the more you realized:  You didn’t have those skills.  You were not gaining those skills.  In fact, you were losing the only skills that you had that were remotely connected to those skills.  And you were losing them faster and faster every year.

You knew this.  It terrified you.  You knew a little bit of what happened to people who couldn’t do what is expected of adults.  They ended up in institutions.  Nursing homes.  Mental institutions.  You didn’t know all the words for all the types of places, but you had seen the people who lived in them.  You had seen neighbors disappeared into them.  And you had seen that some of the people who lived in them, looked a little too close to your own appearance for comfort.

In other words, you’d seen what generations of disabled kids had seen before you:  You’d seen your own future coming, before any adult could even think to prepare you for it.  And the adults in your life did a particularly bad job of it when the shit hit the fan.  In that they sat there and filled you with ideas that made matters worse.

I’m not writing you this letter just for you.  I know what happens to you.  You grow into me.  And that’s not a bad life to have.  You’re safe, as of now, as safe as any disabled person in our position can get.  Which is to say your life is precarious as hell but you’re dealing with it reasonably well.  

What I want to address is the expectations of the children who are, right now, like you once were.  And I want to address the ways the adults around them can affect those expectations, for good or for ill.

When I was you, what I most needed to see, more than anything in the world, was fairly simple:  I needed to see adults like myself living outside of institutions.  By adults like myself, I don’t mean adults who shared the same diagnosis as myself.  I mean adults who shared the same skills, and lack of skills, as myself.  I needed to see adults who would never be able to take care of themselves without significant assistance, living in their own apartments or houses.  Without their families taking care of them.  I needed to see the services that they were getting, that allowed them to remain in the homes of their choice.  I needed to see all the things nobody was telling me.

See, here’s what I was told.

I was told that there were two options.  There was hope, and there was despair.

Hope meant that I got cured, or at least got close enough to a cure that I could function like your average 20-year-old by the time I was 20.  Hope meant that I would be living in the Santa Cruz mountains, totally independently, with no extra help, writing books for a living.  I would have a job, I would have the ability to care for myself, I would have an apartment or maybe even a house somewhere.  This was hope.

Despair meant that I did not get cured.  Despair meant that I continued to lose skills at the rate that I was already losing skills, or even faster.  Despair meant that I would live in an institution for the rest of my life.  Despair meant that the words that had begun to creep into conversations about me, creep into my files, creep into my hearing — severe complex developmental disability, unsalvageable, low functioning, idiot savant qualities, severe mental illness, pervasive developmental disorder, atypical autism, central nervous system disorder — would become more and more solidified, would become my life, would become the only things people knew about me.  They would become the words in my file when I was made a ward of the court and transferred to Napa State Hospital for the rest of my natural life, the way people were making it sound.

These were my two options.  Hope and despair.

Let me tell you something you already know, because someone needs to tell you.  Someone needs to tell you this because nobody in your actual life is telling you this, and it is burning you up inside.  Hope is bullshit.  Or more accurately, what they are calling hope, is bullshit.  You will never in a million years become a 20-something with the skills to make it on your own.  You will try really damn hard, because you won’t know what else to do.  But you will never, ever make it.  Does it sound like I’m trying to get you down?  Because I’m actually not.

Let me tell you something nobody has ever told you:  You don’t need to become their hopes and dreams for you, in order to live outside an institution.  You have a diagnosis of a developmental disability.  Right now, at the time that I am writing to you, it is well-documented already, several times over.  You don’t understand what a developmental disability is.  You don’t understand what autism is, either (it’s one of many developmental disabilities).  So you’ve been paying it no mind, the way you usually do with words you don’t understand.  It just means that you have a disability, in this case a sensory, cognitive, and motor disability, that started before the age of 22.  

In the state of California, where you are living now, there’s something called the Lanterman Act.  This act is supposed to guarantee you the right to live where you want to live, regardless of the kind or degree of developmental disability that you have.  So when you get to be 19 years old, something’s going to happen that you never expected in your wildest dreams.

You’re going to try to live on your own, without much in the way of extra support.  You’re going to fail spectacularly.  You’re going to show up on the doorstep of a Center for Independent Living and beg them to put you in an institution.  They will tell you they’re not in the business of doing that.  Then they will help you and your family and other advocates you’ll have found by then (and you will have found them, or rather they will have found you, because you will look like someone in need of their assistance, badly).  They will help you to set up the supports you need to live on your own, in your own apartment, no institutions necessary.

This is not going to be easy.  This is going to be some of the hardest things you have ever done.  You are going to be living with very little money, because at first you’ll have SSI, and later Disabled Adult Child benefits, neither of which pay a lot.  You’ll be living in low-income housing for the most part.  There will be times when you starve.  There will be times when you have to fight the system for things that are yours by right.  There will be times when the system will threaten you and fight back, because they do that.

But you will live through this.  And you will grow into someone you can barely recognize right now.  You will grow into someone who is truly happy with hirself.  And more importantly, you will continue to grow into the person you are meant to be.  Which is all that any of us can ever ask to do, in fact it is the most that any of us can ever ask to do in our whole lifetimes.

The choice you’re being offered now, between false hope and false despair, it’s bullshit.  It’s all bullshit.  Remember that.  You have a lot of hell to go through between where you are now and where I am now, but I know that you will make it because you already have made it.  But you need to go through that hell.  That hell will shape you, it will change you, and it will make you into a person who will spend the rest of hir life making sure that nobody else has to go through what you’ve gone through.

Every disabled child needs to know that they have a chance at living on their own, regardless of what skills they do or don’t develop.  Living on one’s own should never be made contingent on developing daily living skills.  I know full well that there are still places where the only options are living on your own without any additional supports, living with your parents, or living in some kind of institution (including a group home, mental health housing, or other faux-community settings).  But when we encounter such places, what we need is for people to fight for services the way services have been fought for before.  People have fought and won.  This works!  We need to keep doing it.

We especially need to fight for services in the mental health field to be more similar to developmental disability and physical disability services.  Right now, if a person is too depressed to get out of bed, or a person with schizophrenia has too much avolition to eat for themselves, most likely they’ll be given therapy or a referral to a psychiatrist or support group.  When what they need, is the assistance to get up, and shower, and clean the house, and eat, and whatever else they can’t do right now.  The same assistance that would be given to a developmentally or physically disabled person who was having trouble with the exact same tasks.  Treating mentally ill people differently, as if their problems can all be solved with a little therapy and medication and a lot of pulling themselves up by their bootstraps, is not only insulting, it also puts them in danger of dying or being institutionalized for no good reason at all.  If a mental illness renders a person incapable of showering, then they need the same help showering a person with a physical illness would receive, period.  This is the one area of services that has never caught up with the times, and things like this are why.

But we also need to fight for developmental and physical disability services in areas where those things don’t exist.  We need to fight for them to be available regardless of things like IQ cutoffs, which are unfair but mandatory in some places.  There is so much more to be done, so many more services to be put in place so that people like me don’t have to worry about being institutionalized every time budget cuts come up.  We need to build a world where every disabled adult can choose where and how we want to live, and who we get our services from, and control those services to the best of our abilities.  And right now some parts of the world have that, and others don’t.  But it’s not an impossible dream, because it’s happening all over the world as we speak.  I am living it right now.

And that’s the last thing I want to tell you about.  Because people have made fun of me for wanting to tell you this.  People have said that it’s laughable that I should tell anyone I have a good life right now.  Why is it laughable?  Apparently because I’m living on welfare.  Apparently because I live in low-income housing.  Apparently because I’m on all kinds of benefits.  Basically, because I’m poor.  And being poor isn’t supposed to be anybody’s happy ending.

As you know, our family has been poor for generations.  Our family has been resilient for generations.  We only had the bit of money we had growing up because of a fluke in the economy, and now that that’s gone, I have no money, and my parents have no money.  Our family has known how to live without a lot of money for a really long time.  To assume that because I am poor, then my life is not happy or worth living, is disgusting.

I have what I consider a wonderful life right now.  Here’s how it works, so that you know:  I live with a cat named Fey, who has lived with me for all but half a year of her 15-year life.  We have a deep, complicated, and loving relationship.  I have a small number of close friends, including one friend who truly has the kind of connection you were always thinking must exist somewhere — someone who understands me so well that we don’t need words to communicate.  I get assistance doing the things I’m not able to do on my own, through agencies that assist people with developmental disabilities.  I enjoy painting, playing the violin, and crocheting.  I write a lot on topics related to human rights, especially disability rights, and my biggest goal is to make people aware that all human beings are, at heart, human beings, with something important to give to the world regardless of who we are or what you think you know about us.  I love, and am loved, more than I ever knew was possible, although I don’t have a significant other.  I have a good relationship with my family.  My health is precarious, and I’ve almost died many times, but I’m in better health than I’ve had in years.  

And yes, there are people who will laugh at that.  There are people who will say, “Why does sie think sie has anything good in hir life?  Why does sie think sie can brag to younger autistic kids about how well sie’s doing and expect them to want hir life?”  Well, I don’t expect autistic kids to want my life.  I expect you to eventually want my life, because you’re me, from the past, and I want my life.  But I expect every individual person to want the life that will bring them closest to who they need to be.  And that is going to be different for every single person.

But my life is nothing to sneeze at.  I may not have a lot of status symbols that people look for in a world that sees money and power as important.  But I have love.  I have deep connections with the places and people that matter to me.  I have spirituality that matters to me.  I am becoming the person I am meant to be, and using the skills of the person I was meant to be, to help others.  I know more and more of who I am now, I don’t need other people to tell me who I am.  These are the reasons that my life is wonderful, even if I’m on disability benefits, even if I need a lot of services to survive. 

And the thing about disability benefits?  And the thing about services?  Is that when I was a child, nobody told me these things existed.  I thought my only two options were to become normal or to be institutionalized forever.  It would have been incredibly important for me to see severely disabled people living in their own apartments, on disability benefits, receiving services to help them with activities of daily living.  Because what I was experiencing back then, were frantic efforts to teach me activities of daily living, only to fall further and further behind.  Knowing that my life now existed, would have saved me a number of suicide attempts, runaway attempts, and other things I tried to do to escape what felt like the inescapable fate put before me.

And nobody, not one person, helped me in the way I needed to be helped.  Some of them realized that I was upset about having to be institutionalized, and their solution was to try to convince me that I would learn skills I knew I would never retain.  And to call me pessimistic if I showed any sign of the knowledge that I would never retain these skills.

That’s why it’s so important for people like you, young disabled people, to see older disabled people, with the same severity of disability you have, living their lives in the many ways that they have figured out to live their lives.  Including on disability benefits and government assistance for daily living, if necessary.

And I understand it may be really strange for me to refer to you as severely disabled.  But I can tell you, that’s what your medical records call you, frequently.  And I can also tell you that this is what it is called, when you are unable to learn the daily living skills that everyone else is expected to learn.  When you try to catch up, and all you can do is fall further behind.  That feeling you have, when all that goes on, that’s a feeling associated with being severely disabled.  You have a severe disability, even if you don’t know the name for it.

And as for knowing the names for things.  I know you’re confused by the words developmental disability.  What they mean is a disability that is not psychiatric or a learning disability, and starts before the age of 22.  You’re also confused by the word autism, but you’re not alone there, a lot of people are confused by it.  Right now, the best definition I know is that it’s a developmental disability affecting cognition, perception, and movement.  So it affects how you think, how you perceive the world through your senses, and how you move.  And it affects how all those things interact with each other.  Virtually anything you read by an autism expert about autism will be inaccurate guesswork.  You’ll get a lot more out of reading things by autistic people.  And I know you in particular will get a lot out of it, because I now own one of the larger private collections of books by autistic people.  I started amassing it when I was lonely and confused about where I fit into the spectrum.  

I’m no longer confused about where I fit into the spectrum.  The closest of the famous autistic people, to my autism type, is Donna Williams, even though she says a lot of things about autism that I’d disagree with.  We still have similar experiences of the world.  My friend Anne Corwin is the closest match I’ve ever found.  Speaking of which, you know how you always assumed there was one person out there who would understand you, because their soul came from the same star as yours, as you put it once?  You were right, Anne exists, and she’s very real.  She’s not trying to trick you and she’s not messing with your head, not like some of your current ‘friends’ (lose them, as fast as you can).  She will help you a lot, but you won’t meet her until you’re ready.

So many things you want in life are going to happen for you.  So many things you can’t even imagine well enough to want, are going to happen for you.  I hope this is only the first in a series of public letters written to Mel-from-ago, from Mel-now.  Because I don’t think that, even if you were somehow able to read this, you would be the main person to benefit from letters like this.  I think it’s important for autistic people to know about their possible futures, even if a possible future and their actual future turn out to be very different.  Because if I’d only known that certain futures were possible, if I’d known even a little… I might have been striving towards those futures rather than trying to kill myself to avoid futures too painful to think about.

Love Always,

Mel-from-Now