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Weight We’re Expected to Carry
Greetings, creatures of the interweb. I have a topic to present that I have been putting off for a while, and honestly as I’m writing this, I find it difficult to know where to start. Needing help to do what I need to do is a basic fact of my life, one that not many would give much thought over. There isn’t much reason to. When I speak, people do sometimes forget I am disabled. Which can be a blessing and a curse.
Since I turned the grand age of eighteen, life has been rather an uphill battle. In regards to my care, I should have anticipated that life was going to be difficult when Nemours wouldn’t treat me with Spinraza because I was no longer a child, and they are a children’s hospital. But I digress. A few years ago, my grandmother had to get hip surgery. This hinders her ability to lift me as she had been the primary caretaker for when my father would be working.
When my grandfather got cancer, we found an agency that had health care workers available to lift me, however between one thing and another, services were canceled. Finding a new company that has employees that are physically able to lift my 83 lbs of dead weight, let alone finding a company that allows their employees to lift over 25 pounds has proven to be significantly more difficult than anything ever should be. This has left my father to do the consistent heavy lifting which he cannot and will not be expected to do forever. Taking care of anyone with a disability involves more than one person. Burnout isn’t just possible, it’s inevitable without proper support.
Now, I am very aware of the existence of “lifts” that involve slings and seats. However, they do not work for me. I have had to use a hoyer lift at school from fourth grade to eleventh when I switched to online school, and I re-tried it recently with a representative who sells and specializes in hoyers. All experiences resulted in lower back pain, as my core muscles do not force me upright. I am a floppy, human ragdoll and I can’t hold my head up by myself which makes the whole experience that much more impossibly painful. Therefore, mechanical lifting devices are out of the question for me.
I am drawing attention to this issue because I’m tired of the injustice of it all. Families are expected to manage once the public school system is involved. As if once a particular age is reached, we are suddenly cured of whatever affliction tried to rob us of our childhood. Which would be utterly fantastic, but real life isn’t that simple.
So here I am. Still needing help, still trying to live a life, still trying to figure out how to be heard by the right people. Because what I’m saying here is not just about me, it’s about the system as a whole. A system that quietly steps aside once you “age out” of pediatric care, as if disability disappears with a diploma. As if our families should be expected to have PHDs in our care as well as the strongest bodies on earth, told essentially to just figure it out. As if needing physical assistance becomes shameful or inconvenient once you’re no longer a child.
Disability does not magically disappear. It evolves. It typically becomes more complex the older one gets. Yet the world seems to offer less with each year ticked off our belt with less care, less flexibility, less willingness to understand. Is supposed to be a win that we get older and experience more, but instead we’re met with a constant battle instead of a celebration.
It’s utterly exhausting.
For everyone.
I’m tired of pretending it’s okay we’re expected to be treated this way. I’m tired of shrinking myself into the background to make it “easier” to exist. Spinraza has been absolutely life changing, but I can’t bear weight yet. I can feed myself at one specific table, I can’t hold onto someone lifting me, but I also don’t feel like I’m actively dying. In some ways life has gotten so much better, in others life has been sucked into a whirlpool. This post is me throwing out a rope, hoping I am throwing it far enough to hit something to anchor it.
This post is my declaration. Not of defeat, but of refusal. I refuse to accept that this is the best we can do. I refuse to quietly shrink myself just to fit into a broken system. I refuse to believe that I’m the problem when the truth is that the infrastructure was never built with me in mind.
If you made it this far, I thank you. If you’re someone in a position to change this cruel world, even in a small way, whether through care work, policy, empathy, or simply listening, I ask that you put in your best effort and try.
We deserve better.
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