Usually this blog focuses on regulations that impact Centers and Councils. I am going to have a completely different conversation today. If you aren’t comfortable with where this goes, that is okay. I will resume the more typical posts next week.

In the meantime I want to talk about invisible disability, my own disability, and some of the activists, writers or speakers that have informed my journey. They are much more eloquent than I, and at the end of this post I have given some links in case you want to examine some of these thoughts further. I ant to suggest that, sometimes when we can’t see a disability, and when an individual is unwilling to talk about it,  our community has sometimes questioned the validity of disability in others. So I think this is a story worth telling.


(c) Can Stock Photo / Professor25

Back in the late 1970s and early 1980s, I didn’t acknowledge that I had a disability, not even to myself. In this movement I was surrounded by people whose disability was evident either by their appearance or their use of equipment. I was struggling to get a handle on a set of symptoms that later garnered me a diagnosis . Not that a diagnosis gave me much relief. Most doctors didn’t (and many still don’t) believe that Fibromyalgia is real anyway. Luckily I found one who did. But my symptoms were often debilitating and I was always looking for relief in new medications, pain patches (which at the time weren’t available in the US and my doctor acquired for me from China), muscle rubs, stretches, massage of different types, chiropractor adjustments, acupressure, shots for pain — on and on. If I mentioned pain to anyone — as they still do today — they attempted to offer a remedy from, “Just take more Tylenol” to obscure practices with weird names. And if I could spare the money, I usually tried the remedy. I even offered my own suggestions to people who seemed to have similar conditions. However, it isn’t always that simple to implement the ideas of others. I know I would feel better if I lost weight — but when I can barely move, that is difficult to achieve. I have a nephew who is a faith healer — and is waiting for me to ask for his prayers, I know. People  have suggested marijuana in different forms, the peleo diet, a different mattress, pillows in all shapes and sizes, special shoes and more. I have tried most of them without any long lasting success. I repeatedly use some of them because I seem to get a little short term relief. It is interesting how so many people think they know what is best for us, or in their desire to offer support, instead offer treatment advice. One of the reasons I don’t talk about this much is that I am weary of advice from people who don’t really get it.

I know that my brothers and sisters with visible disabilities have always dealt with the unwanted advice of others. I remember having lunch back in 1980 with Bob Mikesic, now the co-director at the center in Lawrence, KS who was working with me at the time. An older lady we didn’t know came over to our table and patted his hand and said, “When did you get out, dear?” I couldn’t even fathom what she meant, until Bob told me that happened a lot — people assumed he had to be hospitalized since he used a chair.

The truth is, most of the time, if I want to, I can “pass” as not having a disability. I build up my energy, take the pain medication that hurts my stomach, and push on. I truly love being with our people at meetings and conferences, so can usually power through fairly effectively when I am presenting. I smile and ignore the pain. I try not to make an issue out of the things I need to function, including rest and medication and topical pain treatments. I’ve just returned from a wonderful gathering, the SILC Congress, where I presented. I blamed my misspeaks as adjusting to the time difference, but the truth is that I have moments of fog that come and go and that are sometimes called “fibrofog”.  And the truth of the matter is that I had to bank sleep before I left, went to bed early every night, slept on the plane both ways and now more than a week later I still have a bone deep fatigue and pain to cope with. It has been worse — when there is a lot of drama and trauma to the meeting, it hits me harder. But there is always a degree of pain and coping.

I am not telling you this to get your sympathy. In fact, sympathy sometimes makes me prickly. I am telling you this because it is important for us as a community to acknowledge what we need and to support each other by allowing each person to define their disability and their support needs. I don’t have to have assistance with  personal care needs (although I use grab bars when available, can’t open a door with a round knob and sometimes I don’t think I will be able to step over the tub edge after a shower. And sometimes the pain has been specific enough that I’ve needed a brace, a wheelchair for distances, a cane to walk.)  The range of disabilities that is the true “cross disability” nature of Independent Living means that each of us has a different set of needs. We need to find our solutions such as they are, our coping mechanisms. We need to be able to back away if the situation is more than we can handle at the moment. And we need to allow our brothers and sisters the courtesy and respect of letting them tell us how we can assist and provide a safe space for these conversations without judgment. How can we embrace our disability, hold disability pride if we don’t even acknowledge it?

A few years ago, when working with CIL Berkeley, a woman in the group named Stacey Milbern approached me to talk about Disability Justice. It was a fairly new term to me, and she gently guided me to a fuller understanding of how disability justice is more than disability rights. I have great respect for her, especially because she herself is visibly and vocally a part of communities that are often treated unjustly. Through her I have begun to understand that disenfranchisement can have a cumulative effect, that layer upon layer, the bullying, mistreatment, racism, sexism, and more have contributed to our disability experience. I have continued to listen to her through her Facebook posts, because she is someone who understands injustice from a personal level and describes her solutions.  She and others presented at one of IL-Net’s on-site training, Liberation to Leadership, which you can find here. The presenters talked frankly — and painfully — about the added weight of being part of multiple groups who are disenfranchised. If you are looking for a dynamic presenter around disability justice, system change, and diversity, she is excellent in those topics and more.

But back to my journey. In my younger days my appearance didn’t reveal that I could relate to disenfranchised groups. I am beginning to relate as an over-65 woman, but I still have privilege in some areas. I am still white, straight, and don’t have a visible disability.   When I listened to the story below, though, I felt a kinship that I don’t always feel in the company of others with disabilities. Her words resonated as she described the health care system and the needs for support. The title, My Body is a Prison of Pain so I Want to Leave It Like a Mystic But I Also Love It and Want it to Matter Politically — gives you a hint of what you are in for. It is long — carve out 90 minutes — but It was worth it, eyeopening and I found it was very freeing to hear the speaker and her audience describe things that I seldom put into words in my own disability experience. She also references a spoon theory, which can read about here: https://butyoudontlooksick.com/

 

Here is a list  of harmful comments you might find useful to know or share.

Although I have not yet met her personally I have also been impressed by the writings and interviews done by Alice Wong. Check them out here:  https://disabilityvisibilityproject.com/author/alwong199/

 

Personal reflection on chronic pain

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