This wasn’t the way that I planned to end my Disability Pride Month posts – I had another post, and another topic, planned. But last week, an article in Time magazine came out, with an excerpt of a forthcoming book written by one of Donald Trump’s nephews. And after reading the article, it was all I could think about for days – it really burrowed deep into my mind and got stuck there. So I want to end Disability Pride Month by taking today to remind you all that no matter what people may say, disabled lives have value.

For a little context – the article in Time explains that Fred C. Trump III (Donald Trump’s nephew) has a son named William with a physical and cognitive disability. When Donald was elected President, Fred used his proximity to power to his advantage, and was able to arrange a meeting between advocates and healthcare professionals with the Oval Office, to discuss ways to improve the system. Fred thought the meeting went well, but when he was called back to meet with his uncle privately afterward, he learned otherwise:

“He sounded interested and even concerned. I thought he had been touched by what the doctor and advocates in the meeting had just shared about their journey with their patients and their own family members. But I was wrong.

“Those people . . . ” Donald said, trailing off. “The shape they’re in, all the expenses, maybe those kinds of people should just die.” 

I truly did not know what to say. He was talking about expenses. We were talking about human lives. For Donald, I think it really was about the expenses, even though we were there to talk about efficiencies, smarter investments, and human dignity.

I turned and walked away.”

Later, Fred calls Donald to discuss a quickly-dwindling medical fund that had been set up to cover William’s care, and after Donald is alerted to the fact that funds are running low, he has the following exchange with Fred:

“Donald took a second as if he was thinking about the whole situation.

“I don’t know,” he finally said, letting out a sigh. “He doesn’t recognize you. Maybe you should just let him die and move down to Florida.””

Of course, this isn’t my first time hearing something like this. I know what people think about the lives of people with disabilities – about my life: that it’s sad, that it’s less than in some way; that they feel bad for me. People will say, straight to my face, “I don’t know how you do it….” with the implication that they’d rather be dead than disabled. So comments like Donald Trump’s aren’t new to me. But seeing it so black and white in print, and from someone who held immense power over my life as former President, was still a bit shocking to me.

It was the very unnecessary reminder during Disability Pride Month that for as far as I feel that we’ve come over the last ten years in terms of disability rights and justice, we still have so much more work to do. Donald’s comments – echoed in the comments section – showed how many people still would rather me give up my rights – and even my life – because my needs are too expensive.

Because it’s true – my care is expensive. Assistive equipment like my wheelchair, my breathing machines, the conversion to make my car accessible… not to mention the paid care to help me get in and out of bed, to shower, to use the bathroom, to get dressed – none of which I’m able to do independently. And while I do work and have insurance through my work that pays for some of this, the only thing that pays for long-term support services, aka paid personal care attendants, is Medicaid.

But I can’t just think of my life in terms of the dollars I’m costing others. While I do rely on those things to keep me alive, my life is so much larger than that. It’s my job, my hobbies, my pets, my friends, my family – it’s all of the things that make me “me.” I have struggled for years to remind myself of this; to remind myself that I’m more than just a burden on the lives of those who love me. And most days, I feel like I have come pretty far in fighting what disabled people call “the burden complex.” But then I read comments like Donald Trump’s, and feel like I have to remind myself over and over and over again. My life has value. Disabled lives have value.

And this is why I laugh when I hear the phrase, “It’s not personal, it’s just politics.” Because for so many of us, politics are personal. I need the people in power to see my life, and the lives of other disabled people, as lives that have inherent value. It’s crucial to me that officials who are elected to represent me actually do think of me and my needs, and that they create and support policies that will allow me to live a fulfilling life as independently as possible. That’s all I can hope for, this Disability Pride Month and beyond.