Tag Archives: Appreciation

Appreciating Progress

There is a lot of debate in the disaiblity community about what to expect from children with disabilities. Some people say we need to treat them the same we would typical children, because the world isn’t going to adapt to them when they’re grown. Others say we need to stop expecting and start encouragign, valuing and being grateful.

Both these philosophies have some value. I derive my quality of life from meaningful activities rather than meeting expectations of measureable progress, but measureable progress is what politicians and insurance companies look for when fudning or deciding on funding of our care.

It is my belief that expecting a child to be the best self they can be, does not contradict being thankful for the little things they achieve. However, for this, we need to let go of comparing our children to others at all times. I can see how life skills training is important, because, well, the care system is on a tight budget and that isn’t likely to get ay better. But that doesn’t mean that as people with disabilities, as parents, as friends and family, we must take these skills for granted. They’re important, yes, but they don’t come naturally.

It’s true that health insurers won’t care to appreciate the little achievements your child has made, particularly if they don’t end up costing the insurer less money. Same for future employers if the grown child’s skills won’t make them more employable. That doesn’t mean you as a parent need to stop appreciating your child’s progress. Also, as parents, you will more than a future employer or health insurer appreciate progress that is not measureable, such as the child growing into a strong-willed, kind, honest individual, for example. Continue to appreciate this.

I derive quality of life from meaningful activities, from contact with caring relatives, from spiritual growth. These don’t cost my health insurance company any money. If you as a parent don’t appreciate your child’s activvities, friendships and spirit, who will? Friends, if they’re genuine, appreciate your child for who they are, not for the life skills they have or grades they earn in school.

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Three Months Since My Eye Surgery

Today it’s exactly three months since my eye surgery. I’m not sure what to think of it, given that it failed in all respects. That is, it did give me clarity about my prognosis, ie. total blindness for the rest of my life, but I’m not sure I’m adjusting ot this well. It constatly strikes me that I don’t really miss stuff that comes naturally to the sighted, like reading or independent mobility, but I do miss stuff that came naturally to me. I don’t wish to become sighted, and this is not even because it’s unrealistic. Becoming a low partial again is equally unrealistic now, and I do grieve that.

About eight years ago, I drafted a few responses to Robert Leslie Newman’s Thought Provokers, which were story-based discussion topics circulating on blindness E-mail lists in the late 1990s and early 2000s. One of the stories was about sight restoration. I just thought of this.

When I was twelve in 1998, my father came up to me with some new research he’d heard about that would allow blind people who had previously had some sight, to see through a computer chip or something like that. They were testing the thing with sighted people at the time and planned on testing it on blind people by about 2005, he said. “So when you’re in college, you might be a participant for the research,” he said. Not only did I not get into college by 2005, but his ideas were likely totally off-base. I have been severely visually impaired my entire life, in 1998 had some useable vision and now have none, and those equipments would most likely not work for my eye condition, since many require a retina to be attached to the back of the eye. At that time, I didn’t think about the research much. I had recently lost some of my vision and was scared of losing more and all I thought was: “By 2005, I won’t be totally blind.” When I originally wrote this comment, I said I wasn’t, but realistically speaking, I was.

I don’t have all the facts, but it seems to me that in 1997 and 1998, there was some hype about the possibility of blind people getting their sight back. I know about blind people like Stevie Wonder wanting to see for a short while, and I think he even had surgery so he might see for a few minutes (I don’t understand the technicalities) a few years back, but I never quite wished that for myself. In a way, this is strange, since I used to be about as poorly adjusted to my blindness as could be, given my situation. However, I’m realistic and I know that artificial vision doesn’t work for me at the moment, and vision for a short while would be useless.

As I looked for the above comment, I came across several other drafts of responses to Thought Provokers. One was about which would be easier: being born blind or losing your sight later in life. Another was about whether losing your sight slowly or fast would be easier. I talked in these posts about grieving the sihgt I had, not the sight I never had. This may seem odd, but when thinking aobut vision loss, I always miss seeing colors and some pictures. I wish, for example, that I could use Pinterest. Oh wait, I never had that ability and if Pinterest had existed in 1998, I wouldn’t have been able to use it. (I remember having tried to use a mouse but failed.) I guess after all what I miss are the things I could enjoy with viiion. I don’t miss reading print because I’m pretty proficient in braille, and I never cared much for independent travel so I don’t miss that either. What I did care for, and still do, are crafts, pictures and colors. Especially colors, and these can’t be repplicated non-visually.