Many years ago, an online friend of mine was part of a disabled people’s ministry that explored what it meant to be disabled. She wanted to get me involved too, but at that point, the ministry was closing down, so she started her own discussion group. The first question we got was to introduce ourselves without mentioning our disabilities. I don’t know whether I did this with my last post, but I don’t want to do things over again. The second question was to describe your limitations. We could mention diagnoses, but the focus was on how disability limited us. I am now trying to answer this question in this post.
My first disability is blindness from retinopathy of prematurity. My vision is measured as light perception only. Technically, this means i can see the eye doctor’s flashlight when it’s brought into my visual field but I cannot tell what direction it comes from. This commonly leads to the misconception that people whose vision is measured as light perception only, are essentially completely blind. In truth, I can orient to light – just not the eye doctor’s flashlight. I can visually locate windows and see whether a light is on or off. With that last one, I do often need to check twice to be sure and I often find it easier to memorize the position of the switch than to depend on my vision.
Then it gets hard. I used to have a diagnosis of autism, but since that was removed, I now have to describe my limitations without depending on a catch-all label. Let me try. I have sensory processing difficulties. I am oversensitive to sounds and textures. With regards to taste, I am a sensory seeker, in that I crave spicy food. I can also be a seeker in the vestibular sense. I used to love to swing and when the movement therapist at my old institution had a trampoline set up, I was over the moon.
I may also have auditory processing issues. I have trouble understanding speech sometimes, especially in a crowded place. I haven’t had a hearing test in forever, so can’t be sure that it’s processing and not my hearing itself. Sometimes though, I do hear something, ask the other person to repeat it and then before they repeat themselves, I process what was said.
I also have social difficulties. I can keep a reasonably normal-sounding conversation but it takes me a lot of energy. I have trouble with reciprocity, in that soetimes all I do is listen and sometimes all I do is talk. I can’t do group conversations, because I get overwhelmed.
I have mild communication issues too. Sometimes, when anxious or overwhelmed, I go mute or stutter or have trouble finding the right words. I remember going mute in high school too, but not sure whether I had these issues before that. It could be anxiety, since I also have that. My psychologist is considering diagnosing me with generalized anxiety disorder, which basically means you worry to an extreme degree about all sorts of things. There are also additional symptoms, like difficulty concentrating, physical tension, etc.
I have cognitive issues too. This may sound stupid, because I have a high IQ. Maybe executive dysfunction is a better word. I appear lazy sometimes, because I get easily overwhelmed by relatively complex tasks and then end up not doing them at all. I also feel anxiety when people ask me to do things, but when I take the initiative, I feel more confident. I wrote earlier that this could be pathological demand avoidance. However, when for instance my husband asks me to do something, i’m fine with it unless it’s a complex task.
Then I have emotion regulation difficulties. I used to have a diagnosis of borderline personalty disorder, but that can’t co-exist with the brain injury I suffered from a brain bleed and hydrocephalus. I don’t have the relational instability that many people with BPD have. Mostly, my emotions are extreme. In this sense, I relate more to the profile for multiple complex developmental disorder (McDD) than to that for BPD. I have never been psychotic, but I do have some delusion-like thoughts.
Lastly, I have motor difficulties. I saw a physiatrist till I was about eight, but was too young to remember the diagnosis. I have a much weaker left side than right, although I recently found out that my grip strength is equal in both hands. The fact that I use my left hand much less could indicate mild hemineglect (lessened attention to one side of the body, usually left). I also have and have always had a lot weaker muscles than most people. I have however learned to live with that. I mean, what do you need to reach your toes for when in sitting position? I do have significant balance and coordination issues. MY gait is very wobbly. I recently learned that healthy people can climb stairs without even holding onto the railing. In my home, where the staircase has only one railing, I need to hold onto the railing with both hands and wobble sideways.
These are the limitations I can think of now. I have some others, but this post has been long enough. When I feel like it, I will answer the next question I remember, which was about adaptations for coping with your limitations.