A bit over a week ago someone who has ichthyosis asked me why I classify myself as disabled, because they don't. They said to me:
"I actually think that this may come across as offensive to some who are who unable to accomplish certain abilities that the average person has no trouble with such as walking for example.... I would like to delve deeper into what you feel nethertons actually disables you from doing?"
(It was a public comment so I have no qualms in reposting. But I don't want there to be a pile on of comments in response to that person, I just want to show how I feel.)
I am well aware that there are people with milder and more severe forms of ichthyosis than I have. But at times - and for a long time lately - my ichthyosis has caused me to be sorer, more isolated and more unable than usual.
This past weekend has been a disappointing one. I booked a trip away with Adam, as a relaxing break from our busy lives. I had booked it prior to having my wisdom teeth out, so could not predict the state of my skin then. I have not been able to be active - most of the time away has been spent in bed, sleeping or reading. I've been wearing pyjamas a lot. I can't hold Adam's hand because my hand hurts too much. There was skin everywhere - in the bed, in the bath, on surfaces I haven't even touched. I brushed it off where I can.
I can feel my heartbeat in my legs. It pounds. They're weepy, scaly and probably mildly infected. I can't maneuver them properly - every step is a challenge - especially over the bath and down stairs. Putting on socks and stockings is hard, and Adam had to help me put my dress on because my hands and wrists hurt from the fabric.
I've been asking Adam to open and pour me water because I can't grip the bottle, and he's been bringing me things to bed so I don't have to get up.
I told Adam I'm scared, this is the sorest I've been in a long time. I told him I'm sorry. He hugged me for a long time.
My skin has suffered a shock from the wisdom teeth extraction. It often does after medical treatment, stress and even excitement. It's so very sore, and honestly, if I could take a cure pill for the pain aspects of the condition right now, I would.
There's the stares and comments too - not so much during this weekend because I'm hibernating, but they're constant and similar to what my more visibly disabled friends encounter.
I've not always identified with having a disability - it has only been in recent years. The word was a slur, I wasn't disabled like them, I'm ashamed to admit to my previous internalised ableism.
But through meeting and working with others with disabilities and chronic illnesses, I saw I have more in common than I thought. And since identifying as having a disability, I've developed a bigger perspective. A sense of pride. Researched disability politics and history. I belong to an amazing online and offline community. It's brought me many opportunities in writing, speaking, running events, awards and being asked for an opinion by the media. And I'm not as reluctant to ask for help when I need.
I carry a lot of guilt - especially around getting the rest and treatment I need instead of going to work (I feel I'll be letting everyone down if I don't go). I feel guilty for spending time in bed when I look like I could be up and about. I worry I'm not doing enough for Adam. And comments like this one also make me feel guilty - guilty for not being disabled enough, questioned in my own community.
It doesn't matter if I identify as having a disability and others with the same condition don't. I don't have a parking permit or get the disability support pension. I work full time and then some. I don't use a wheelchair. I am not neurodiverse. And I don't resent or question those who do get these things (they're definitely not privileges nor things to be ashamed about). But the very questioning of my identity as a disabled person is damaging. I wasn't going to explain it, but now I have.
Disability is complex. It doesn't look typical. And it's often the physical and attudinal barriers that are more disabling than the diagnosis.
I also wrote this piece about embracing labels last year - it might help you understand disability identity more.)
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