Hi everyone, it’s the Fourth of July. Independence Day. And that’s what I want to talk about… Independence.
In case you don’t know me, my name is Karin Willison and I recently turned 40 (shh, don’t tell anybody). I live in Indiana after spending many years in California.
You may have noticed I filmed this video from an unusual location. Yes, I’m in the bathroom. And I have a very good reason for that. You see, most of you get up every morning, or maybe in the middle of the night if you had too much to drink, and you pee. You don’t think much about it. But that’s a privilege I don’t have.
As you can see, I use a wheelchair. I have cerebral palsy and doctors told my parents I would never walk, never talk, I would be severely intellectually disabled and they should just put me in an institution and forget about me. Thankfully, my parents didn’t believe that. They were determined to help me succeed and live independently in the community.
And that’s what I’ve done. When I was 18 I moved all the way to California to attend Stanford University and I got my Bachelor’s degree in English. Then I worked for a couple of Internet companies and I eventually got my Master’s in Psychology. I live in my own home, and I have four beautiful dogs including my service dog Aria. I have a great job; I work as an editor at The Mighty, a website for people with disabilities and other health conditions to share their experiences. I have lots of friends, and I’m a travel blogger. I’ve lived a really good life.
But that could all change. In the next few days, politicians in Washington could take away my rights. You see, there is one reason I’ve been able to do all these things, and that’s Medicaid. I have three forms of insurance — Medicare, private insurance, and Medicaid. But without Medicaid, I would not be able to live in my own home. That’s what I want people to understand. Medicaid is the only insurance that pays for in-home care. Every day I need somebody to come and get me out of bed, help me get dressed, and yes, help me pee. And home care gets expensive — about $4000 a month. As I said, I have a job; I have a pretty good job, but I don’t make $4000 a month. Most people don’t. And even if I did, how would I pay for my care and still live? It wouldn’t be possible.
It’s really hard to work and stay on Medicaid. I have to document all my expenses, and I have to be careful not to make too much money because otherwise I would lose all my benefits — even if I wasn’t making enough money to pay for my home care and live. But I do it because I want to work and it’s the only choice I have.
Now that choice could be taken away from me, because Trump and the Republicans want to cut $800 billion from Medicaid and give it to the rich. That cut is going to hurt people like me who have high medical costs through no fault of our own. My care is paid for by a Medicaid waiver that funds home and community-based services. And even though the Supreme Court ruled that people with disabilities have the right to live in the community, home and community-based services are still considered an optional part of Medicaid. But nursing homes are not. And it’s ridiculous, because nursing home care costs a lot more.
If Medicaid is cut, the state of Indiana may take away my home care. I would be forced to move out of my house, give up everything I own and my dogs and go live in a nursing home. At 40 years old! That’s not right. That violates my rights as a human being. I deserve to live an independent life in the community. People with disabilities have the right to life, liberty and the pursuit of happiness like all other Americans.
That’s why right now I’m asking for your help. I don’t want money and I definitely don’t want pity. I need you to make a call. Please call your Senator. Tell them to vote NO on the health care bill and NO on any bill that cuts Medicaid. Join ADAPT and other protesters at your Senator’s local office. Talk to your friends and family, no matter who they voted for, and ask them to call. Because we all have the right to pee.
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