EDS and Vision Rehabilitation

I'm not an expert in blindness rehab or Ehlers-Danlos Syndrome. These are just my thoughts and experiences as someone who has been both legally blind and bendy since birth. When I did vision rehab I wasn't diagnosed with EDS so no one knew why I was having so much trouble with many of the skills I was trying to learn. Since eye problems are not unheard of in EDS and are common in Kyphoscoliosis type I thought this might be useful to someone.

First thing is that most people with EDS have bad proprioception. So, you put a person who has trouble sensing where their body is in space in sleep shades and that gets even worse. For me, that means that no matter how hard I tried I kept crossing streets slightly diagonally under shades. Walking faster is supposed to make it easier to walk in a straight line when under shades but it just didn't help me and I felt so unsteady that I couldn't manage it.

Also, unstable joints mean that muscle memory doesn't work well for travel. What I mean by this is that stride length will vary and so the number of steps it takes to get somewhere won't be consistent. This mainly applies to indoor travel. For me, I still have trouble walking through the living room in the home I've lived in for almost 8 years. I often use the pre-cane technique of wall-walking that I learned as a child. (I do need to be careful doing that outdoors because I will quickly strip the skin off my hand following a rough wall surface.)

Those unsteady joints also mean that asking for a seat on public transit can be appropriate for blind/vi people with EDS. The movements of a bus or subway can be more than a bendy body can adapt to without falling. Also using the elevator instead of the stairs or escalator may also be the right choice especially when it's crowded and/or when going down. (Going down is harder than going up according to one of my physical therapists.)

Using a cane can be a bit tricky. Encountering an obstacle can lead to a wrist subluxation or dislocation. I had to use a very light carbon fiber cane and couldn't manage to tap it, I just fatigued too quickly and couldn't always maintain the right rhythm. Sometimes a telescoping cane would collapse before my wrist but I wouldn't recommend one for extensive travel. A loose enough grip to avoid injury would sometimes mean I'd drop my cane and finding it could be hard.

Poor proprioception can also extend to the larger space around us. An unscientific poll has lead to me to conclude that even fully sighted people with EDS tend to get lost easily and have no sense of direction. Becoming blind probably won't magically fix that regardless of how hard one works in Orientation and Mobility.

Using a support cane can help with the unsteadiness if the wrist can handle it. However, I never managed the coordination required to use both simultaneously. Eventually an O&M instructor told me that while my travel skills were fine I didn't walk well enough to cross city streets and so paratransit would be appropriate for me.

I'm very grateful to her. She was one of the first O&M instructions who worked with my status quo and didn't focus on 'but there's no reason you aren't walking normally and I'm going to push you till you are.'

Eventually some people with EDS will need to learn O&M skills that are appropriate for crutch and/or wheelchair users.

The poor proprioception also means that holding things level can be almost impossible. This will mostly come up in the kitchen but also with buffet lines and eating. Some of this may come from instability in the arm joints but regardless of the cause it's there.

For ADLs, from casual observance hand tremor is not uncommon in people with EDS, myself included. This complicates reading braille and many kitchen tasks. I was never coordinated enough to manage two handed reading. Plus, repeated dislocations have lead to nerve damage in my hands.

Many people with EDS have symptoms of dysautonomia. Symptoms vary but functionally they include dizziness, fainting or near fainting, nausea, heat intolerance, and fatigue. So intensive rehabilitation programs might not be appropriate.

This is by no means an extensive list of all the ways EDS can impact the things done during rehab. Every program is a bit different. I feel like I've painted a bleak picture but I'm still glad overall that I invested time and energy in improving my skills. At first glance I'm a pretty crummy blind person, I know that. But without vision rehab I think it would be even worse.

Blogging Against Disablism Day

I have both a congenital sensory impairment (legal blindness) and a chronic illness (fibromyalgia and CFS/ME/CFIDS).
Frequently, both communities are grouped together since both things can be considered 'disabilities' however, their needs and concerns are different. I'm honestly not sure how effective this is and I'm not sure how well each group can understand the other.
Honestly, it is in the best interest of those with congenital and acquired physical/sensory impairments to promote the image that they can do almost anything with the right, usually minor, adjustment. (Such as a ramp, reader, etc.) The emphasis is on how basically capable this group is as a whole and that's how it should be.
I realize that physical/sensory disability can be associated with chronic health problems. Many people with spinal cord injuries have chronic pain for example. Plus, health problems can lead to disability.
Chronic Illness seems so different. Yes, it may require similar use of aids & appliances and the need for personal care attendants. However, I'm not sure how well the two fit together.
Personally, once I learned 'how to be blind' I pretty much had it figured out. I got the 'blindness skill toolbox' if you will and was able to go on with my life. If an obstacle came up, I usually even had an idea of what would help eliminate it. The support I needed was mostly about society and how to change it.
Then my fibromyaliga and CFS/ME/CFIDS kicked into full gear. Things became unpredicitable. Yes, I needed to learn a new set of tools but that box will never be static. My enemy is now multifold: my body, society, my doctor, and minute aspects of the environment around me.
One example is attendant care. A person with a disability may need attendant care to be able to go out into the community. They are frequently housebound without attendant care but once they have appropriate attendant care many things become possible including working. For a person with a chronic illness, attendant care won't necessarily enable someone to go out into the community or any other quality of life enhancement. Sometimes all it will do is help slow the rate of degeneration.

As for public appearances, I'm pretty sure that when I get out of my snazzy red wheelchair and take a few steps to my seat I'm doing a dis-service to another young person because it spreads the idea that maybe the next person who comes by will be able to do the same thing. Or when I use my chair on Monday but not on Thursday someone will get the idea that I was 'cured.' Should I not do what I can because it may somehow harm the public image of other people with disabilities?
I am usually pushed by Mr. Wacky. If I'm sick enough to need to be in my chair, I'm not well enough to push myself long distances. However, I doubt many people without a chronic illness would want to be pushed.
People with static disabilities want to present themselves as basically functional and competent.
People with chronic illnesses seem to want and need different things depending on the nature of their exact illness. Overall, they seem to want to be believed to be truly physically sick and to be believed about their current level of ability at that moment. Instead of struggling to be seen as more capable than they appear, the struggle actually seems to be the opposite.
While there is strength in numbers and collations are very effective in matters of civil rights, I'm just not sure that grouping disability with chronic illness is the most effective thing for both groups long term.

Starting World of Warcraft

One of my few rules for my SO about gaming had been “Anything as long as there isn’t a monthly fee.” Gaming is the main activity that my SO does to relax. While he can play the same game over and over again, he does get bored eventually. At which point, a new game or at least new material is in order. Also, we both mostly socialize online and I didn’t want to do anything that might discourage that for either of us.
While I’m embarrassed to admit this, I was jealous of the ‘square headed girlfriend.’ I didn’t want him to stop gaming per se. I just wanted to spend some time with him. Sitting on his bed knitting as he played immersive games didn’t give me a sense of connection.
My vision hasn’t always been good enough to allow me to play computer games. Eventually I just stopped trying. One of the first things my SO bought me after I recovered from cataract surgery was a PlayStation2. I’ve played The Bard’s Tale with glee. Rampage: Total Destruction annoys me but I still love destroying major cities. And Final Fantasy X has been wonderful but I’m no where near done the game. However, we quickly discovered that he and I couldn’t use the PS2 together. If I was positioned so I could see the screen then he couldn’t and vice versa. In a competition, my SO would always win as he has far superior vision and usually better hand function. Using the PS2 together was more an exercise in frustration than a friendly bonding experience.
Around this time I found a series on TV called Rise of the Video Game. My SO and I watched this series together and had a lot of fun talking about it as we watched. Due to our age difference and my blindness, he’d experienced a lot of things that I hadn’t. One of the last games featured was World of Warcraft and we were amazed at how it looked on the screen. The discussion of the game’s popularity with gamers with disabilities and chronic illnesses was also appealing and gave me hope that even I might be able to play.
Initially I tried to find a free MMORPG that would work on both PC and Mac. I had switched from a PC to a Mac when Tiger came out so that I could get my screen access software included with my operating system. Being a multiple OS household means that what works on one machine doesn’t necessarily work on another. My research lead to Second Life which was quickly discarded as inviable. So the search began for something that would work for both of us, as that was the entire point. WoW seemed to be our only option.
We had a serious talk about gaming and money and decided that it might be worth giving WoW a try if it was to become our primary game. We looked at what we were spending on new and used games, guides, and expansions and realized that it wasn’t an insignificant amount. Taking up WoW would mean no buying $10 games, used games, or downloading expansions/modules for already owned games that weren’t free without talking about it. We got the 15 day demo and emailed the one friend we knew who played WoW. He was thrilled and quickly replied with a wealth of help. Eight months later this friend is still amazingly helpful, we’re still playing WoW, and neither of us has spent money on gaming that wasn’t WoW related. (This was a smart financial decision for us.)
I didn’t find a lot of information online about playing WoW with a visual impairment. I may write some posts about it myself. So, I had to figure it out on my own. Addon free, it was rather hard and I’m surprised I stuck with it. I was lucky in that my first interaction with an experienced player who I didn’t know was amazingly positive. I give that player a lot of credit for my staying with the game. My first toon has long since been deleted but I’ve stuck with things partly due to the kindness of others and my own stubbornness.
Once I got my act in gear and made my troll priest I began to work with my SO. He had already taken the time to figure out how the game worked and get used to the mechanics so that he could focus on helping me. Wow. It was amazing to work cooperatively with him on something without fighting over a monitor. While he did know more than I did, we were both getting to explore together and there were things that I was able to learn and pass onto him. Our different play styles and abilities aren’t a disadvantage with cooperative play.
Initially, I didn’t want to play on my own. But, my SO and I have radically different sleep schedules and we each began to play during lonely awake hours. I’m advancing much more slowly than he is, but we have a rule “Don’t compare yourself to sighted players.” I’ve spent time helping his toons level which is one of the few times I ever feel helpful. Gradually I’ve even learned to ask for help when I get stuck. So WoW has helped me as a person and has improved our relationship as well.

Accessible voting versus secure voting

At one point I was an advocate of accessible voting. The more my
partner reads to me, the more I am ashamed to be connected to push
for electronic voting machines.
I may be unique in this view, but I'd rather not be able to vote
independently rather than open up the voting process to hacking.
I have the option of voting absentee and getting a trusted friend to
help me vote if I'm worried that I won't like the help available at
the voting booth. I have heard concerns that these absentee ballots
won't be filled out according to the voter's wishes. Someone in that
situation needs help to get into a healthier one.
While I don't really like needing help to complete a ballot and am
worried that it may not be filled in incorrectly I am far more
uncomfortable with the fact that using electronic accessible voting
machines may make it easier for someone to modify my and others votes
later.