Today I want to talk about disability advocacy. It is something I’ve been watching since I found out I was autistic. My parents originally began getting trained in advocacy from various bureaucrats who had managed to get paid jobs to teach others. The real deal then was school inclusion because I was a kid, or parent support groups where other autism parents came together to grieve.
Then there were the many meetings my parents went to – meetings on social justice, meetings on people first language, meetings on being respected as a person with disabilities, or as a parent. It’s not that disability is new in my family. My grandma and my Aunt Sue had MS and used wheelchairs. We understood people were valuable for being people whether disabled or not.
Actually, my parents should have been paid to teach those classes and conferences. So much of all that is just about getting support for agencies that cynically use parents and kids as their audience and then use their time up as volunteers. Often, those agencies even manage to include a person with disabilities on their boards of directors. Never paid positions for parents or the disabled, just volunteer positions.
I’m sure some of that work was very helpful. My dad did have a real job training leaders in Partners in Leadership. My mom wrote articles and got legislation passed to protect people from seclusion and restraint. Those were very helpful activities, but, all in all, they were overworked for something I’m not sure was that useful.
My dad was at a lot at meetings and we were left in the care of only one parent and that was a lot of work for my mom. It was as if advocacy was messing up our lives by making my parents too busy. When my mom got a job as an advocate, at least she was able to learn more meaningful things, like about benefits and housing and the laws and such.
She learned the strength people must have to keep on fighting for rights. Once my mom was in the Independent Living movement, she met the real deal, not just politically correct armchair advocates, but the real deal: the folks who chained their wheelchairs to buses to make them accessible, the people who are Not Dead Yet, and now those who are dead.
It was there that my mom met the wonderful people who truly left her in awe, the people that still mean a lot to us. In Colorado the real stuff is still going on. The Colorado Cross Disability Coalition and Atlantis/Adapt are the best ever. They fight hard; fight to the death for our lives.
We suffered a great loss here recently of Carrie Ann Lucas, who was made dead by her insurance company. We suffered the great loss of Laura Hershey. We suffered the great loss of Wade Blank. I urge you to Google these people. They are my heroes, and don’t even want to be heroes. They showed us all with their brave lives that people must fight for equality no matter what.
Now with the draconian BS perpetrated by the government and insurance companies, people with disabilities are at risk of death-making. That’s when the insurance companies decide to go with cheaper meds and it then spirals into your death. It happens regularly when you are a devalued population. It just happened again.
I’d like to end this blog with a poem our departed friend Laura Hershey wrote-- Laura who could only move her head and her little finger, Laura who traveled the world in her power wheelchair, Laura who taught many people about disability pride like her friend Carrie Ann Lucas also taught us. It’s called
You Get Proud by Practicing by Laura Hershey
If you are not proud For who you are, for what you say, for how you look; If every time you stop To think of yourself, you do not see yourself glowing With golden light; do not, therefore, give up on yourself. You can get proud.
You do not need A better body, a purer spirit, or a Ph.D. To be proud. You do not need A lot of money, a handsome boyfriend, or a nice car. You do not need To be able to walk, or see, or hear, Or use big, complicated words, Or do any of those things that you just can’t do To be proud. A caseworker Cannot make you proud, Or a doctor. You only need more practice. You get proud by practicing.
There are many many ways to get proud. You can try riding a horse, or skiing on one leg, Or playing guitar, And do well or not so well, And be glad you tried Either way. You can show Something you’ve made To someone you respect And be happy with it no matter What they say. You can say What you think, though you know Other people do not think the same way, and you can keep saying it, even if they tell you You are crazy.
You can add your voice All night to the voices Of a hundred and fifty others In a circle Around a jailhouse Where your brothers and sisters are being held For blocking buses with no lifts, Or you can be one of the ones Inside the jailhouse, Knowing of the circle outside. You can speak your love To a friend Without fear. You can find someone who will listen to you Without judging you or doubting you or being Afraid of you And let you hear yourself perhaps For the very first time. These are all ways Of getting proud. None of them Are easy, but all of them Are possible. You can do all of these things, Or just one of them again and again. You get proud By practicing.
Power makes you proud, and power Comes in many fine forms Supple and rich as butterfly wings. It is music when you practice opening your mouth And liking what you hear Because it is the sound of your own True voice.
It is sunlight When you practice seeing Strength and beauty in everyone, Including yourself. It is dance when you practice knowing That what you do And the way you do it Is the right way for you And cannot be called wrong. All these hold More power than weapons or money Or lies. All these practices bring power, and power Makes you proud. You get proud By practicing.
Remember, you weren’t the one Who made you ashamed, But you are the one Who can make you proud. Just practice, Practice until you get proud, and once you are proud, Keep practicing so you won’t forget. You get proud By practicing.