Professionally, I work with high school students with disabilities to help them transition out of high school. A large percentage of my caseload is Autism. I absolutely love this population and continue to learn ways to serve them appropriately. Up until the past few years, there was a subset of Autism called Aspergers Syndrome, which was “high functioning” Autism. Most times these students were quite bright and could academically handle school with or without accommodations but it was the independent living and social skills where they really struggled. For this reason, it was often hard for agencies and school systems to figure out the most appropriate classes or services because they were “in between”. Aspergers Syndrome is no longer an official diagnosis according to the DSM-IV.. It’s now just the Spectrum. Those on that high functioning level of the spectrum still are often “in between.” I was working with a family recently and they said that they called their son an “in betweener” his whole life.
I can SO relate.
Being partially sighted is a blessing and a curse.. I am an “in betweener.” I can see enough to sometimes identify faces but not enough to read a lot of print or see changes in elevation. I can see enough to tell if my destination looks somewhat familiar but not enough to read any signage or see anything with any certainty or clarity. I can see enough to make eye contact most times but that throws people off to where they think I can see more than I can. I am an in betweener.
It is a blessing because I have lost my sight over time and therefore been able to use what little sight I had to adjust and continue to develop more skills for my continued vision loss. I have been able to get two college degrees and learn my State job with some sight. (This has been a HUGE blessing to me because it definitely has been easier, I think, to learn this job partially sighted than learn it with no vision- the paperwork is bountiful).
But it’s also a curse having partial vision. I have to adjust to vision loss again and again.. Sometimes I wish it would have just all happened at once so I could get the adjustment to my disability over with and move into. Instead I have to constantly adjust as do the people around me. I go through the grief cycle with many of my vision changes. It’s exhausting. I am not deemed appropriate for some services because I am partially sighted but do need them. It’s just a tough spot.
I am also pretty self conscious at times about being partially sighted. I feel like people sometimes (or really most of the time) don’t get why I need the Assistive Technology, Accommodations, and guide dog. My eyes fatigue super easily. So if the print and lighting is just right I may be able to read a little bit but then by the end of the document, I won’t be able to read it anymore. It will just be a giant blur and I’ll have a headache. But to some people because I could read those first few words, I’m not that visually impaired. They don’t get the fatigue thing and that the light in the room has to be just right, the font just the right size, the contrast just right, and I have to have not been exhausted at that point. The chances of all of that happening is very slim which is why I have amazing Assistive Technology. I also have an assistant at work that is able to devote a lot of time to me and my caseload and spends EXTRA time reviewing everything that I send out and receive because I do miss things. It’s not just because I want an assistant all to myself, but because she has to do a lot more double checking and paperwork type tasks than my sighted peers do. But look, with the right accommodations, my performance at work is great. The same applies tons guide dog. Because I can make eye contact with you and can travel so easily, people don’t think I need a guide dog. What they don’t realize is that I may be able to make eye contact with you but that’s all I can see if I’m looking at your eyes.. I can’t see your hair, mouth, etc. My vision is that tunneled. So if I’m walking down a sidewalk looking right ahead, I won’t see cyclists who are coming down one side, I won’t see fire hydrants or any obstacles in the path, I won’t see any tree limbs hanging overhead, and I can easily get turned around. Additionally, if the sun is too bright, there is any overcast, or it is too dark or rainy, I’m essentially totally blind. With the way the weather changes in Texas, this is often. I also am able to function so well because of Makiko. People don’t realize how many subtle cues these guides give us. For example, Makiko will often put her head on a chair if she knows I’m looking for it. Or she will take me to the same spot each time. So while it just looks like I’m doing just fine, it’s really her.
It is a self conscious thing because while I shouldn’t care what others think, I do know and have heard that they don’t think I need certain tehnology, accommodation so, or my guide because I’m partially sighted. And that hurts.
I do look sighted. But what does blind look like? Let’s fight the stereotype that blind people wear sunglasses all the time or have glossed over eyes or can’t make eye contact. There are so many complex eye diseases out there and the blind people that have them DONT fit into that stereotype. Fighting that stereotype will help people like me, an in betweener, have less conflict due to my vision loss on a daily basis. The less we stereotype people with disabilities, the more opportunities they/we will have to be independent and contributing, working members in our society.