Sunday, April 29, 2012

Step 29: The Greatest Fears

I had hoped I could title this "The Greatest Fear" - as in singular.  But I can't.  I've settled for being thankful that among the many fears I have as a parent of an adult son who has autism and other medical conditions, that I only have a few greatest fears.

One greatest fear is that more and more people will only value a life before it's born rather than seeing their value and protecting their life after birth.  I see it each and every day, people wanting to pass laws protecting the unborn, sonogram laws, doing away with Planned Parenthood laws.  So many laws for that, yet not one law that forces a criminal justice system to enforce laws we already have that are broken.  People who have disabilities are abused, maimed, and murdered in state schools and institutions each and every day perhaps, yet but a fraction of those who are committing those horrendous acts are prosecuted, let alone tried and found guilty with a sentence longer than that of someone found guilty of abusing a dog.

Another greatest fear being that my son might end up in an institution (other than Harvard) one day.  That when I can no longer care for him and because I didn't win the lottery to fund private in-home care the rest of his life, that my only choice would be that.  What kind of society allows parents like me to have that constant worry?  What kind of society would pay for all the services in the world for someone in a state school or institution, but not fund a fraction of that cost to simply help them care for their loved one in their own home?

The reason I fear that for my son is because I know that with very few and far between exceptions, you get what you pay for.  And our society does not pay people enough to care for other people.  Our society pays absurd amounts for adults to throw a football and barely minimum wage for someone to care for another human being.  Even less to teach them.

What happens when a society follows that practice?  You get what my husband and I to this day, cannot talk about.  As strong and as brave as my husband is, he simply will not allow me to speak of the horrors of abuse in state schools or institutions to him.  Things that I can't stop myself from reading about because those things have happened to my friends whose children could very well be my Brandon.

I fear that because I know how much my son loves his freedom.  Though he needs structure, it needs to be structure that follows his choices, things he likes to do. Not the rigidity of a schedule that someone else determined for him based on what fits their needs and staffing, not his wants or desires.  I don't want him forced to take a shower that he's afraid of simply because a bathtub was too expensive or takes too much time.

I fear my son becoming what Roger was.  I'll never forget Roger, whose story I learned of in my Partners in Policymaking Class years ago. A person who through some circumstance ended up placed in a state school where the staff there thought he was too disabled to learn anything.  So they never taught him.  Until one day when one of the few and far between exceptions of a staff member decided Roger was worth teaching, that Roger could learn, that Roger could communicate with the help of technology.  For years Roger was left to sit in the confines of his room following a rigid schedule that focused on what they could do with the staffing they had, not on what Roger would want to do.  One day this new staff member took Roger outside and he typed on his communication board, the one she taught him how to use, these words:  The sky is blue. That's one of my greatest fears.  That one day Brandon will no longer be able to go outside when he wants, to see for himself that the sky is blue.

That he would lose the freedom he so loves. 

There's an episode of Dr. Quinn Medicine Woman called Birdman.  It was about how a highly educated professor who taught at a University but who was seen as a bit "different" ended up in an insane asylum.  For years he would look out the window and study birds.  Everything about them.  He studied how they could fly because he wanted to fly.  Perhaps he was put in that insane asylum because he taught his students that one day humans would fly as birds did.  A very insane thing to think, let alone say, way back then.  He managed to escape that insane asylum and crossed paths with Dr. Quinn whose family accepted him and his oddities.  Eventually it was found where he escaped from and that someone would be coming to take him back.  As harmless as he was, because he believed he was a bird he was seen as a danger.  As insane.  Someone to be locked up.  Watching that show was hard in that respect.  My son is often seen as that Birdman, with his oddities and mannerisms. People must at times think he's insane and belongs in an asylum. I love how Dr. Quinn explained his behavior... That perhaps he wasn't insane because he thought he could fly, but that by looking out the window each day and becoming a bird flying away, was the only way he could stay sane.

How many children, youth, and adults who have autism and who are placed in self-contained classrooms, state schools, or institutions do you think are standing by a window (if there even are any) looking out and imagining they are the Birdman flying away?

I would say all of them.

Those are my greatest fears.  That my son could lose the identity I worked so hard for him to have. That he ends up becoming who a staff member needs him to be, in a doped up, drugged up sit-down-and-watch-tv client rather than the happy-go-lucky boisterous always on the move person he is. That as one of the many "Roger's" of this world, my son will end up locked inside some building somewhere being cared for my someone who thinks he can't learn, let alone think he would actually like to go outside to see that the sky is blue.  That as a bird who loves his freedom to fly, someone will take away his wings, his ability to choose what, when, where, how.  And if you don't think these things happen today, you best watch this video:  Click here to watch "Forgotten Lives" video.

But what is my greatest fear?  Dying.  Because of this country's obsession with institutionalizing people they do not want to be burdened by. We leave them in the care of the mostly incompetent so that those who would be competent can have careers more edifying, meaningful and profitable.    No, this isn't in fact a feel-good step in this Autism Awareness journey, but it is a reality-check step.  For my typical son I don't have that fear of dying and leaving him behind.  He can speak for and care for himself. But because of my son who has a disability who can't, and the society we live in, especially the state I live in, Texas, which boasts of the most institutions in America, and the most abuse in them over any other, -- I very much do have that fear for my son who has autism, no matter how much Hopeism and faith I try to conquer it with. I know that probably is a direct contradiction to the faith I boast of and feel I have, which is why I suppose that I'm driven to daily draw closer to God - to help with that fear.

But no amount of faith in something better will change the facts of what is right now and what will be if we don't all take a stand in demanding something better.  What's that scripture?  "Faith without works?"  We have much work to do on behalf of the 1 in 88 who might not fully recover and who will need care and a home after their parents are gone.

Click here to read the U.S. Department of Justice report on Texas State Schools and Institutions.
In case you didn't click on that link just yet, here's the summary, and even if you did read it, the summary is worth reading again:  "We have concluded that numerous conditions and practices at the Facilities violate the constitutional and federal statutory rights of their residents. In particular, we find that the Facilities fail to provide their residents with adequate: (A) protection from harm; (B) training and associated behavioral and mental health services; (C) healthcare, including nutritional and physical management; (D) integrated supports and services and planning; and (E) discharge planning and placement in the most integrated setting.

I guess I'm a dreamer, I love classic movies and the inspirational quotes from them. I think that life can end as good as it sometimes does in the movies I love. I guess this day's step is one in which I hope to end like in the movie A Christmas Carol where the spirit is showing Scrooge things that would be if not changed. 

Scrooge and the spirit watch the Cratchit's enjoy their meal. Scrooge asks if Tiny Tim will live. The spirit claims he will die if these things remain unaltered. Then the spirit echoes Scrooge’s former words, saying if Tiny Tim is to die, he should do it and decrease the population. Scrooge feels ashamed of himself. The spirit tells Scrooge that he has no right to determine who shall live and who shall die. In the eyes of Heaven, he may be considered less worthy to live than those he condemns.

I hope society really lets that last line sink in because by allowing such practices for our children, youth, and adults with disabilities, you have condemned them in determining their freedoms should die.

To the 1 in 88 Tiny Tim's out there who need their future altered.

To the Hopeism that it will be.