About me, about disability life

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Despite running the Disability Intersection and attempting to add services, I am a low income social worker. I don’t mean in the way social workers are grossly underpaid for the work we do (which we are) I mean I still use the county attendant care program despite having two degrees in social work and many certifications to go with them. I mean that I use Supported Living Services which are funded by the Department of Developmental Services (I have Cerebral Palsy) and thus don’t have the option of choosing who works with me for those hours or whether they can move me to get me out of bed.

My nephew came to help me in September after I fell and broke my back and was being neglected by the person I hired through my county hours, so I am thankfully better now and deeply grateful, as he is still with me as my main attendant. But we both want more in our individual lives and for me.

POTS means that even though I was working and speaking before it, my life turned upside down and I nearly died of malnutrition and low stomach movement (gastromotility) coupled with it being too fast and resulting in diarrhea. I stayed in nursing homes and had a mom who absolutely devoted herself to the long road to wellness and I am still alive. And grateful. But I am tired. Starting the Disability Intersection and proving the need for it when disability services think they are just fine without the voices of actual people with disabilities is completely tiring and frustrating. Trying to do this without my mother and when people think disabled people’s needs for connection, care, employment and fulfillment are already met by what we have is difficult, and I feel like a lone voice here.

But I know I am not alone, and talking about this matters. I have been saying all this about our needs and power and abilities since 2004. It hasn’t resulted in sustained income or massive change, and it is with that in mind that I am going to make this a series of posts about why that is through a bigger lens than just my life. Because it’s time. The Disability Intersection is not a “Passion Project” and I refuse to believe it is. Our skills as a community matter and so do our other identities that meet here. All of them. All of us. We all matter. Keep going.

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