How I'm Feeling Right Now

Why I'm terrified for the next four years, and hurt by the people who voted for Trump.

This week has felt incredibly surreal. I know the title of this is “How I’m Feeling Right Now,” but really, I still don’t know exactly how I’m feeling. Less than a week ago, I was at a rally here in Pittsburgh with thousands of other people, cheering on Kamala Harris. Now, I’m trying to wrap my head around the fact that millions and millions of people voted to not protect me and my interest. I’m hurt, and sad, and angry, and disappointed, and scared.

I’m not going to try to analyze the election and what happened - that’s far from my area of expertise. But in talking with friends, and in looking online, I’ve seen a lot of discussion about how to move forward with friendships and family members after this election. One group of people is talking about cutting people out of their life who voted for Trump, and another group saying they don’t understand why people can’t separate politics from personal lives.

To me, this election feels different than the typical liberal vs. conservative, Democrat vs. Republican differences of opinion. This race was personal to me, and to so many others, because it wasn’t a race debating policies, but felt instead like it was a race debating whether or not I have the right to exist.

So I wanted to explain a little bit more about why I, as a disabled woman, am feeling so scared and worried, and about why I’m having trouble reconciling the fact that people I know and love in my life voted for Trump.

I have Spinal Muscular Atrophy (SMA). SMA is a genetic, progressive disease, meaning that it’s something I was born with, and that it will slowly take away more and more of my abilities and functioning as I get older. I’ve always used a power wheelchair, and I’ve never been able to independently do the basic things that most people take for granted every day - getting in and out of bed, getting dressed, using the bathroom. So I need help for those things, which comes in the form of my parents as unpaid caregivers, and paid personal care attendants (PCAs). And I use a lot of expensive medical equiptment too - a power wheelchair, two different breathing machines, a feeding tube, a shower chair… the list goes on. Being disabled is often quite expensive!

While this next part shouldn’t need to be said, I’m going to say it - I still firmly believe that my life is worth living. I have a job I really enjoy, friends I love to spend time with, community organizations that I’m involved in, hobbies that I spend my time on. I feel that my life is extremely valuable and fulfilling, just as much as someone without a disability.

Unfortunately, Trump doesn’t agree with this. Trump’s nephew, Fred Trump III, has a son with a developmental and physical disability. And when talking to Trump about the cost of his son’s care, the two had the following exchange:

Fred Trump III says he called Donald Trump after seeing him at Briarcliff, a family golf club in Westchester county, New York. He says he described his son’s needs, increasing costs for his care, and “some blowback” from Trump’s siblings.

“Donald took a second as if he was thinking about the whole situation,” Fred Trump III writes.

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

So Trump thinks that maybe, it would be better if people with disabilities - people like me! - just died.

Trump and his spokespeople have threatened to dismantle the Affordable Care Act (ACA). The ACA is what makes sure that insurances have to cover people with a pre-existing condititon - that they can’t deny me coverage just because I was born with SMA.

Under Trump’s last term, his administration allowed states to apply for waivers that let them run their Medicaid programs as block grants. My PCAs are paid through by Medicaid, because Medicaid is the only insurance that covers long-term care provided by PCAs - it’s not covered by Medicare, or by private insurance. When you turn Medicaid into a block grants, states are given a block of money, and they get to decide how to distribute it. But when that money runs out, there’s no more! So either they have to limit the number of people who can enroll, or they have to drastically cut the amount of money each person is eligible to receive. Either option is not great for the people like me who rely on Medicaid, and the PCAs they pay for, to get dressed and use the bathroom.

So when I think about the next four years, I’m afraid. I’m afraid for my life, I’m afraid for my access to healthcare, and I’m afraid for my ability to get in and out of bed each day. I don’t want to be morbid, but access to adequate care is literally what keeps me alive. Just living with SMA for the next four years is challening enough, and filled with so many unknowns. Adding the stress of having to worry about whether I’ll lose insurance coverage or coverage for my PCAs every day for the next four years feels almost insurmountably difficult.

Trump doesn’t believe that my life as a disabled person is worth living. And right now, it feels like every other person who voted for him believes that too - that they don’t think my needs are worth protecting. It’s very, very hard for me to feel like I want those people in my life. Why should I surround myself with people who think my life is less worth living than theirs? It’s also very, very hard for me to feel like they ever really even knew me at all - because if they did, and they saw everything that goes into my life day in and day out, then how could they vote the way they did? It makes me feel like they don’t really care about me being in their life, after all.

People always talk about separating politics from their personal life, but for me, simply living IS a political act. It’s just not possible for me to separate my life from the policies and politics that keep me alive. And there are so many other people like me who are going through the same thing right now, for whom living is an act of resistance.

I’m not necessarily surprised by the results of the election, but I am disheartened. I’m upset to know how many millions of people voted not to protect my needs and my life, and on a personal level, I’m hurt that people I know and love voted that way, too. Honestly, I’m not quite sure how to move forward - I’m still figuring that part out. But I do know that I’ll keep living, and keep resisting, because for me, there is no other option.