“Not sighted enough to be sighted and not blind enough to be blind.” A statement made by a friend whose husband’s world has almost literally been closing in on him due to the retinal disease called retinitis pigments (RP). Does this sentence make sense to you? It does to me. It really does to me.
Many surveys and research studies over the last few decades have identified blindness as one of the top fears of persons in a multitude of different cultures. It is frequently among the top five fears named. Deafness, by contrast, doesn’t usually make the list, even if more than twenty-five items or more are indicated. Interesting to note, if one were to investigate smaller, more specific people groups, specifically the deaf-blind community, a totally different perspective results. Within deaf-blind groups, when asked which they would choose if they could between being blind or deaf, the great majority chose blindness as preferable to being deaf. Can you make sense of this? Once one knows more about each population, it begins to make sense.
I learned some interesting things a few years back when a good friend chose the local deaf community to study as part of a human service minority group course requirement. She shared with me how tight knit the community of deaf people tend to be. The reason they are so tight knit is related to the reason most deaf blind people would choose to be blind over being deaf: communication. As dreaded a thought as it is to us sighted folk, a blind person can learn and manage to get around without eyesight. However, despite mobility and other sight-related activities being an advantage for deaf people, their ability to communicate with others is extremely limited. Helen Keller said it like this, “If I could choose, I would rather be blind because if I could hear, I could have conversations with the people around me. I would feel connected to the world.” Keller attributed her isolation with not being able to hear. Interesting food for thought.
There were so many things about blindness and vision-impairment that I was completely ignorant about before being catapulted into the vision disabled world, such as canes being excellent tools for impaired individuals who have a good deal of sight remaining and how impaired a person with compromised eyesight can actually be. Also, along the lines of the definition of the “legally-blind”, the idea that blindness comes in degrees. Actually, sighted comes in degrees as well.
Living in the state between fully sighted and fully blind is a unique, perplexing and often frustration “middle” No doubt, some sight is better than none. I doubt anyone would disagree with this. We are grateful for the eyesight that Mandy has and the prognosis that vision loss will be later and more gradual than most others with her retinal degenerative condition. Mandy has a condition called Leber’s Congenital Amaurosis (LCA) which is technically a form of RP. She was diagnosed at age five (THAT story is for another time). The condition is degenerative, progressive and currently without a treatment or cure.
Let me try to describe the challenge and frustration of this “middle” Part of it is that her impairment is not a stable one. We have met other young persons with vision impairments who know that their condition is permanent but static. For example, those with premature retinopathy or albinism, they know the extent of their impairment and can become adjusted to it. Even those who are totally blind know what they are facing and can get going with adapting and moving forward. Although difficult and grievous, there is less “unknown” This is said in no way to minimize other people’s differing painful experiences. The point is that for us, this middle is fraught with challenges and frustrations, not least of which is the not knowing. The not knowing when, how, or if there could be a chance for it to be avoided? Trust in The Lord does not eradicate fear.
Other examples of this distressing middle include both keeping up with research and trials on possible future treatments while also planning for Mandy to be ready for a dark world. This middle involves both participating in fundraising for the search for a treatment or cure while also supporting Mandy in learning Braille, independent cane travel and other compensatory skills. At times, I find my head spinning trying to make time for both reading and study to keep up on the research, trials and discoveries doctors are making worldwide and the investigation and search for helpful tools, programs and other opportunities to help Mandy prepare for vision loss. It can involve helping people who think Mandy is more capable/less impaired understand that she needs support, help and compassion. Other times, sometimes later in the same day, it is helping people who think she is less capable/more impaired understand that she is not without sight and can do things independently which they might not realize.
Sometimes there is a desire, either by Mandy herself or Mandy’s dad and I, to underplay her challenges. This is when we present it more as, “she has a vision impairment” going on to describe that she needs a lot of light, some additional acclimation to new areas and some occasional support. These are often things like new programs/camps who are not affiliated with the school system and not connected to IEP services. They are usually situations when Mandy is able to have social experiences with peers and she does not want to stand out. There are other times, however, when we really want to drive the point home that Mandy is impaired and has needs which may not seem obvious. This is when her special needs are presented as that she is “legally-blind”. Perhaps this sounds like manipulation. I guess technically it is. It is, however, with the motive of helping to find a good balance between Mandy feeling comfortable and independent while also making sure she is safe and that her needs are understood.
When people notice Mandy at times when she “sees” particularly well, they don’t realize that a combination of ideal factors, some we can control/influence and some that we can’t, make that possible. When at her best, blending in with the other kids and not appearing impaired at all, chances are that most of the following are true: she is well rested; she is in a good mood; it is early in the day; she is in a comfortable; familiar or highly motivating environment; she has not had an especially visually challenging day so far; and there is a good deal of natural or fluorescent lighting.. If a few of these factors changed, you’d be looking at a girl feel her way around, bump into things and get frustrated. If it was bad enough, she would appear completely blind. So, despite what usually is or seems to be minimal impairment, a good of planning, anticipating and micro-managing has been done over the years, especially when she was younger.
This leads to the last aspect of raising a partially sighted (partially blind) youngster which people may not realize. Often times, more times than not, teaching Mandy everyday things requires virtually the same strategies, techniques and patience as it would if she were totally blind. Those of you who have seen her in action may find this hard to believe, but it is true, especially when she was younger. Vision-impaired people, particularly youngsters, don’t “notice” the things we sighted people do. Mandy has never been one for details. She literally sees “the big picture’ and tends not to notice the trees in the forest. So, despite having a good deal of useable vision, it doesn’t cross her mind to use the effort which would be necessary to watch me fold the laundry or unpack and put the groceries away. She doesn’t naturally notice and it is not enticing enough for her to choose to notice. Therefore, EVERYTHING NEEDS TO BE TAUGHT. She has to be shown, with a good deal of creativity, effort, patience, and sometimes, repetition, to do everyday things most children pick up naturally.
I demonstrate this in the next post entitled, "The Jelly Jar"
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