Writing about disability often feels risky when your profession is one that requires a certain amount of physicality and energy. Throughout my 6.5 years as a companion I have written about my disabilities at certain times, then retreated into a space of not writing or talking about them. It has never really hurt my business to talk frankly about my health— if anything it has improved it. The current independent companion market is one that demands authenticity and vulnerability, or at least the illusion of those, but I don’t necessarily want to encourage that trend. I don’t necessarily want to be viewed as using my disability for branding (though certainly I am doing that, but the reasons behind me making that choice are complex and personal). I don’t want to be anyone’s inspiration porn, I just want to be people’s porn porn. I don’t want anyone to think this is risky for me to share for the wrong reasons.
I am mildly disabled. When I was born it was discovered that I had a congenital hip dysplasia, and I had to be in a cast that kept my legs in a frog-like position for the first several months of my life. Following that I wore a cowboy brace on and off for the first several years of my life, and learned to walk wearing that brace (they weren’t sure I would be able to walk, but I was). I was also diagnosed with hypotonic cerebral palsy at 2, and had to go to physical therapy for a year and some change to learn how to chew, swallow, hold my head up and balance while walking. In addition, I was admitted to an alternative public preschool program (I ended up attending the same school k-12) where the teachers agreed to give me special assistance with balance and walking. All and all, I grew into a fully and properly formed hip that did not need surgery, the ability to eat without assistance, and an ability to almost balance like a normal person (one reason I still don’t wear heels too often is this!). The fact that I was dealt a difficult learning curve in order to “fit in” has stuck with me throughout my life, though, and I believe that my fairly severe anxiety disorder partially stems from early experiences with these disabilities that I don’t quite remember. In addition to an actual serotonin deficiency, of course, but no one really knows if anxiety comes from serotonin deficiency or if anxiety causes it.
I was recently sorting through some of my storage bins and found medical records from my early childhood, some which had notes from physical therapists and also a few tests that were done on me to determine whether or not I had a “normal” IQ (I was quiet and shy and some people in my life were concerned I might be, well, r*tarded was the word they used in the paperwork) (this was the early 80s). One thing that really struck me as I went through these records was how focused all the adults in my life were on getting me to a less disabled place so I could participate in society, such as it is, even at the tender ages of 2 and 3. One physical therapist wrote something along the lines of (this is paraphrased): “[name redacted] is a pleasant child who wants to do well, but she becomes whiny when tired or frustrated.” This was written about me when I was 3, and I had to laugh because that is still true to this day! It is true for most adults, as it is true for most 3 year olds. Was I being admonished by someone whose job it was to help me cope with my disability for sometimes being cranky? In different records it was also noted that my mom “acknowledges that she feels overprotective of [name redacted].” I’d hate to see what medical professionals write about people with more severe disabilities, though perhaps they are kinder?
This diminishment of disability into bad attitude has followed me throughout my life, and unfortunately I am just as guilty of doing it to myself as other people are of gaslighting me around my health. One thing I deal with as an adult, and don’t talk about a lot, is chronic fatigue. I’ve tried several different doctors, healers and treatments over the years but have not found any secret trick to having more energy— other than taking the amount of time my body actually feels like it needs to rest! Which is more than average. I’ve been taught over and over again to believe that this fatigue is mental, that it’s related to depression or insomnia (it probably is related to the latter, but I also haven’t found any cure to that other than allowing myself to sleep in until 10am or noon). If I just take the right combination of vitamins, eat right, drink water, get regular acupuncture, exercise, the energy will come! Just lose/ gain some weight. Try yoga. Make your bed first thing in the morning and declutter your closet. Eliminate coffee, eliminate drugs and praise the lord. Quit whorin. Repent.
This is such an insidious thought pattern, and one that is foisted on people with real diagnosis’ and complaints again and again by doctors and other health industry professionals. It teaches us all that it’s our own fault if we don’t feel at maximum capitalist productivity, vs. the fault of a system that doesn’t have a safety net for the mildly or even the severely disabled (in some cases). It teaches women and those perceived as women, especially, to hide our pain and fatigue.
After going through these records I decided to break out my old google-fingers and do a little research on adults with hypotonic cerebral palsy- a condition that every doctor and alternative healer I consulted knew I had been diagnosed with- and issues with chronic fatigue. You may be as not-shocked as me to learn that both hypertonic and hypotonic CP patients report chronic fatigue as an issue. Those with hypotonic CP have difficulty building muscle tone, and much of our fatigue could be explained by the fact that it literally takes more energy for us to move than it does a person who can more easily build muscle tone. Yet every time I asked a doctor if I might be tired because I have CP, they always responded “no.” Often, they would look to my depression diagnosis and say that had to be the cause, but the only reason I have ever been diagnosed with depression in the first place is that I complained of chronic fatigue. How maddening.
As I said in the first paragraph of this meandering post, my reasons for sharing this on my professional blog are complex and personal and for once in my life I’m not actually going to detail all of them! But if you take anything away from reading this, I want it to be that I, and others anywhere on the disability spectrum, are deserving of kind and informed treatment from everyone in our lives. It is my belief that there needs to be drastic change in our society before true disability accommodations (for many) can be achieved, but until then just let some of us be sexy people who need a lot of R&R. Or whatever it is that we need to be to try our best to fit in.