My intensity has been known to get me into trouble. I live with a fire in my belly. I’m a not so retired activist whose mouth goes from 0 to 90 miles an hour in 2.4 seconds. There was mic drop moment about two weeks ago in a team meeting.
People who file applications for Home and Community-Based Services have to provide five years of bank statements to prove that they are poor. Recipients have to be Medicaid eligible to receive the services. Imagine my outrage when one dad told me his bank wants to charge him 8 bucks a page for his own bank statements! This is a man who can’t work because he has to stay at home with a son who has a significant level of intellectual disability. I was in the meeting, trying to express my frustration while keeping my language clean. I was so worked up, I disconnected myself from the meeting in Teams. Luckily, my Manager understands. They called me right back!
Witnesses who don’t know me well probably think I’m mentally unstable. I am not, but I have the lived experience of waiting for something significant to happen. Being on a waitlist for something you need is painful. Even to get to the point of application, people who are in institutions go through a sometimes lengthy process of transition planning. People quietly stew while they navigate a bureaucratic system that deliberately makes it hard to receive something. Some people give up. That’s what the system wants. I also wish the system realized that disabilities don’t go away. We have to prove it every year.
Some of my regular readers have heard this before. To live in the community is not only what people want. It is more cost-effective to be in the community instead of being wearhoused in an institution. Even someone who only has an SSI payment monthly has to pay for groceries and rent. It helps the economy. It’s common sense.
Some of my new colleagues in the publishing business said I was intimidating. I was shocked, but when I thought about it, I realized it is just another example of being misunderstood. I spark when I am angry. I feel like the disability community is fighting a war. I won’t apologize for being tough and telling the truth. Before you judge me, you need to know that I feel the obligation to assist others who are not yet living freely in the community.
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