This started out as a Facebook status in response to all the great feedback about my article "Being A Grown Up Is Weird: On Being 22 and Still Disabled." It turned into its own little love letter. I am so thankful for all the support and I hope you will keep the ideas you have read on this blog in your mind and heart. Keep fighting the good fight.
July 23, 2015
From my Facebook
"Thanks so much for all the great conversation and feedback on my latest piece. Some people may be hesitant to read, because such struggles are labeled as "depressing." It is a fact that many of the social and economic barriers placed in front of people with disabilities are very sad. But in order to make positive changes, it is sometimes, and often, necessary to talk about difficult things. Pretending these barriers don't exist because they don't go well with tea and cookies is not constructive, and simply hides the real-life struggles of so many people.
So, let's talk about these issues. They can be very sad, but they can also ignite powerful discussions, build solidarity, and make a "disabled people's issue" a "people's issue." I don't want people to come away from this article feeling sad, but instead feeling like they have found something in society worth changing. I hope my crippy cartoons made you laugh, but also made you understand the serious issues behind them. I hope it inspired you to find other people who "give a damn" and to use that energy to begin the long process of fixing these archaic service systems. You might not have a disability, or even know anyone with a disability, but we still need you in this fight. If you have ever loved anyone or wanted a good life for yourself, these issues are relevant. Of course, I am angry that our society has allowed these issues to take shape, but I am hopeful too. Hope comes from putting hard things out on the table and working together to change them. I also want anyone reading this to understand that being honest about these barriers does not mean being disabled leads to a miserable life. I am proud of my disability, and it has brought more good to my life than bad. But I am not proud of the way disabled people are undervalued and overlooked in the world. Life is always worthy, but we can't stop asking ourselves as a society to make it even better, for ourselves, our loved ones, and for others that we have never met. A lot of people have asked me "what can I do?" to help with some of this. The issues will not be tackled overnight, but you've taken a great first step in reading about them. In the meantime, I would suggest this:
- Share these types of stories, read disability news, blogs, etc. Write about these issues yourself. Making noise around these issues will help bring attention to them.
- Write to elected officials about issues like Medicaid reform. Talk about them until those in office can't ignore us.
-To those without disabilities involved in healthcare and personal care assistance, making a conscious choice to provide compassionate, competent services is a small act that can turn the tide in a big way.
-To those without disabilities anywhere, in any community, in any field, understand that disability rights are human rights. Speak with us, not for us. Together we can change these policies, and the attitudes behind them.
-Finally, to my brothers and sisters with disabilities, make yourselves seen and heard. Sometimes, talking about this stuff feels pointless, because the system is so daunting, but remember that your voices matter. Our voices and our stories matter. And if someone tells you they don't, remember that no one else has the right to put a value on your life. Have high expectations for yourself, even when the world does not. Demand them. I will be right there raising hell beside you."