I've got a Bee in My Bonnet. And it's a BIG'un!
We've entered a new phase of our disAbility journey. We're in high school now. All those years of attending workshops, seminars, classes and conferences, (remember, I'm a seminar slut,) and we are staring at the door marked "Future." We're at the threshold. And, I. Do. Not. Like. The. Looks and Sounds. Of things!
A couple years ago, I smelled something skanky. I knew from the start of this journey that we live in the 49th state in the nation in terms of what it provides to people with disAbilities. But, somehow in grasping onto the clouds of higher visions involving some form of supported independent living and integrated workplace, I forgot…There's no one but my lonesome to pay for these things.
Is that why, then, that we are–to quote Tennessee Disability Coalition founder and director Carol Westlake: flying hard and fast BACK into the seventies? Frankly, folks, I'm a little PISSED off that teachers, school systems, state workers, even other parents and new providers arriving on the scene are touting segregated living and employment models like they are the latest and greatest.
HELLO? Anyone ever heard of a little term endorsed by the NIH (National Institutes of Health) called: BEST PRACTICES?! We haven't worked this hard to integrate our students with disAbilities. From institutions to being "allowed" to go to school, from special schools to general education schools and then, to end up, like Carol says, flying back into the 1970s wasteland of depressingly low wages and expectations and working environments, i.e.: sheltered workshops.
Listen, I respect those who've made these choices, especially those who truly had no other modes. But, it also kinda confuses and worries me when other parents have been raising their children in the same period of history that I have and are opting for these models. Yes, we do have a right to make our individual choices and I need to respect them. But, let me ask: did these parents make that choice because a teacher or a state worker or a provider sold it to them as the latest and greatest? Or, are they making it because it seems safer and less risky? Because maybe they are scared? Maybe still grieving that little Johnny was diagnosed with autism (or, insert other disability) when he was 3–20 years ago? I know such parents are there. I meet them frequently.
Okay, maybe I'm being a little harsh here. Really, I need to exercise compassion for those who are doing their best. Those who think the offerings they provide are the way to go. And the truth is, for some people they are the best and the way to go! And, it may help a special needs parent sleep better at night to know their son or daughter with special needs is locked up in a segregated dormitory "where they will be safe." I need to respect that heart-felt fear. But…if you are listening…can I urge you to know disAbility history of why we've tried to move away from such models, about the injustices, abuses and horrors that were and can still be wrought in such environments? (As well?)
Hey, and did you know–I'm not talking to just parents here–that there are people (I've met them) even those with what would be classified as "severe disAbilities" living in some form of independence and working out in the…real world. The real world. The real world, where I've always taken my daughter to school, to shop, to worship, to play. I'm not going back. I'm not leaving. I'm staying right here. And, dammit, I will roll up my sleeves and I know I cannot wait on some assinine state entity to do the things, which by law they should be providing. I must do it myself. That is my vision. That is my plan. Pray that we do not end up a statistic. One who tried but ended up enrolling in segregated programs because…I got too old, too tired, too broke, could not find an open door, no matter how many I knocked upon….It happens. It happens. But if enough of us who dream for MORE for our children with disAbilities refuse to give in or give up, I'd like to think, collectively…we can make it happen. It is happening. But the momentum has not gotten cranked enough. Help me. Help me crank it up. Please.
Now here's your chance to change your life and your child's forever. I'm dead serious. This is the must-do free advocacy training program that every parent must do to become the best advocate they can for their child and others. You'll learn about the heart-breaking history of people with disAbilities in our country and how far we've come but how far we've yet to go. We are the last to fulfill our civil rights. and you'll learn hot to affect policy on all levels, from your school to our nation's capitol. Almost every state developmental disability council has a Partners program. The deadline for Partners in Policymaking Leadership Institute, of which I am a 1999 graduate, is April 30. Enroll here. Now. Please. Your child needs you. We need you. No age–parent or adult with a disAbility is too young or too old.