Carly is an adult with autism, President of the Autism Society of Ventura County, California and a Vice President at Bank of America
The most frightening things about transition is how will we be treated in “the real world”? Have the services and supports we’ve received prepared us? What will the future hold?
In today’s climate, any surety around the answers to those questions is lost, but there is something we can do about it. We can advocate for Disability Civil Rights.
When we think about Civil Rights movements, we usually remember the struggles of our African-American and LGBTQ neighbors, but what so much of America is only just starting to realize is that there are thousands of advocates around the country standing up for disability rights, as well. We have lived in the shadows for so long. It wasn’t until the 1990s, when the ADA became law that we started to come into the light. We must remember it’s not a struggle that can be won overnight, and it can’t be won alone. It wasn’t until the Americans who were not a part of the struggling group joined the fury that progress was made in our sister movements. And that is the case for us as well. We must embrace the disability half of autism to get the services necessary to thrive with the ability half.
The extreme end of the problem can be found in history. You may have heard estimates that more than 200,000 people with disabilities were murdered by the Nazis. Take away education and health supports, and what is already a problem will only get worse. While our friends and neighbors won’t die all together in a camp, they will die when denied care in a hospital for lack of health coverage. They will die of suicide when the bullying becomes unbearable. They will die on the streets when there is nowhere to live, and no transition to prepare them for the stark realities of adulthood.
It may seem harsh to say, but it’s time to stop being complicit by our silence. For those of us who do speak up, it’s time to recruit others to stop being complicit.
Advocate not just with your local, state and national legislators, but with your neighbors as well. Respite services, mental health services and support groups are vital for our caregivers. So many either don’t have access, fear the stigma, and/or are not aware of available services that are out there. A white paper released by the Ruderman Foundation earlier this year found that at least once a week, a person with a disability is murdered by their caregiver. We need to speak up and advocate for more support for those caregivers, more services for their charges, and less tolerance for such heinous acts by the media and courts. Desperate people do desperate things, but this is not ok.
Tell your friends and neighbors that you need their help to take 5 minutes to call their Senator or Representative to let them know they support services for the disabled and their caregivers. Tell them that Medicaid may be the difference between you or your child having a happy productive life and a bleak future in an institution or even homeless. Even if you have the resources to cover those expenses today, what if something happens and you can’t tomorrow?
If you’re an adult on the spectrum, “come out” and tell people your story. Let them know what helped and where you didn’t get needed help, so that future generations will have what they need and won’t go through any hardships you went through. Be positive in your approach. Figuring out what works and what doesn’t work to support people with autism is an ongoing process. Mistakes were made. Some mistakes even had serious consequences, but going forward, we have be positive in our statements to make positive change a reality.
Now is a critical time for the Disability Civil Rights Movement. We can’t afford to stay in the shadows with all that is going on around us or face setbacks that could last a generation. We must speak up. We must encourage others to speak up. We must advocate for a better future.