Crips on Reddit

Playing the wise old woman (crone?)

Photo by Richard Stachmann on Unsplash

(I asked Unsplash for a picture of gloom.)

I am a Good Student of my 68 Years of Experience

I started following a couple of Reddit groups a couple of years ago. There is one for my specific disability, ichthyosis. There is another for disabilities in general.

I wrote the below combination advice and rant for someone who has been asking what I consider preliminary questions about having a disability (or multiple disabilities.)

I’m pretty sure that I saw your first post about advice for things you can do when you’re stuck at home. I also think I understand why you might find knitting “strenuous”.

I have been “severely” disabled all my life. I was fortunate in some ways, and was able to get appropriate mobility aids which enabled me to work full time for many years. My disabilities were mostly about ambulating and chronic pain for a long time. As I aged, I developed osteoarthritis.

I always imagined that when I retired, I would spend time knitting and doing paint by number, and maybe even weaving. Then, about three years ago, I started having debilitating pain in my shoulders and arms. Any activity led quickly to pain. So after many doctors’ appointments I eventually got a diagnosis of the arthritis being in my shoulders, and probably also a torn rotator cuff. A doctor told me I should consider a shoulder (or both shoulders) replacement. I would, but I am concerned that I wouldn’t be able to do the rehab. So I try to stay within my new limits. It is really difficult, but it’s that or have another flare that holds me up for weeks.

You used a phrase I haven’t heard before, “low support needs.” This may be a new term. I think of disability as occurring on a spectrum of severity, and each of us can travel that spectrum within any given day or week.

How the government thinks about it is to what extent can you perform independently your ADLs—Activities of Daily Living. ADLs can cover everything from getting dressed and bathing, to light cooking, shopping and housework. To get SSI or SSDI, you do need medical documentation and if you have a condition that is not on their list of conditions that are by definition “disabling”, you will very likely have to go through multiple submissions of documentation and multiple appeals.

Unless you are very fortunate, as I currently find myself, you may always struggle to find adequate financial resources to pay for the types of assistance you need at any given time in your life. The government’s best support is measurably below the poverty level.

This level of almost-but-not-really-adequate support epitomizes the pervasive ableism that still dominates our society as whole. I thought that this not-so-warm blanket of ableism might change in my lifetime, at least a little, and maybe it has.

But this 2nd DJT administration has and will roll back many of the gains that have been made.

This is, at least on my planet, reality.