Working in an Independent Living Center for as long as I did and then working for state government in an executive position for eight years was a privilege but doing pure advocacy in the community with the Disability Policy Consortium for the last five years has been especially rewarding.
I think it's because advocacy is deeply embedded in my soul. Since the age of 14, I've had to fight relentlessly just to live the way everyone else takes for granted that doesn’t have a disability. I just want to be on a level playing field with the same opportunities the people around me have. That’s all, nothing more.
I’ve worked hard, fought a lot of battles; won some, lost more. I've managed to live in the community with PAS for 45 years, got married to the love of my life, have a family, and made a lot of friends along the way. I’ve been blessed by any standard. Unfortunately, this reminds me of what I used to hear a lot when I was coming up through the IL movement usually from parents or providers, “we all can’t be Charlie Carr.”
I didn’t and never will apologize for who I am. Everyone has the potential to live independently in the community outside of nursing homes and other congregate settings when the proper supports are in place. All I want to do is survive and never give back the gains that we’ve made with our brothers and sisters from around the country and, in fact, the world.
This brings me back to my passion for advocacy. Now, I can take all of the life lessons I've learned and the knowledge, resources, and connections that come with them, to bear down legislatively and bureaucratically to make a change. I haven't been this happy in a long time.
Interestingly, I’ve come to learn and appreciate that we should be lifelong learners, always listening and adjusting the way we think and act. The DPC is the place where this is happening for me. I’ve met and continue to work with so-called millennials who have intersections with disability, gender identity, social justice, racial equality, poverty, LGBTQ orientation, and on and on. In a word, it’s empowering!
As a white disabled male of privilege, I’m learning about structural racism and disability elitism. I now believe in anti-racism and will speak out and act in the face of discrimination and racism. I fully realize and understand how the disability community has managed to marginalize subpopulations in our own movement. I now fight to stop it. We can change and must each commit to it. Those that rest in comfort after the many battles we've been in are squandering their time and talent. Now more than ever we’re under unprecedented attack. We need you again!
Let this summer be the “Summer of Our Discontent” that Dr. King referenced in his 1964 call for social justice and racial equality through activism and non-violent opposition. We have to fight to ensure that the ADA remains the cornerstone of our civil rights and isn’t eroded bit by bit. We have to fight for the complete preservation of the ACA. The Trump administration has a lawsuit currently before the Supreme Court that renders this vital healthcare legislation and delivery systems developed as unconstitutional. If this happens, millions of poor and middle-class people will lose their healthcare.
Millions of immigrants are being denied basic appeal rights when US officials determine that they’re not “eligible” for asylum even though they’re fleeing persecution and harm from oftentimes corrupt dictators.
In the time of the global COVID-19 pandemic, hospitals are rationing healthcare to people with significant disabilities. Quality of life measures determine whether a person with a disability should be given access to more involved and expensive healthcare such as using ventilators. States use Crisis Standards of Care that assign numeric values to levels of care needed to survive; the more you have, the lower your score. As you can imagine, people with disabilities are very low on the priority list and, subsequently, don’t get treatment and are left to die.
Another tremendous advantage of intersectionality is strength in numbers. There’s a presidential election in November and many down-ballot elections from senators and representative’s to governors and mayors. We need to pull together and be active politically now as if our lives depend on it, as Justin Dart would say.
That means every one of us should be registered to vote and educated enough to know which candidates support our values, and, most importantly, VOTE for them!
Let this be Summer of Our Discontent.
#REVUP #CriptheVote .