Ableists Disabled

Forewarning: this is a post much longer than the recommended maximum word length and has quite a bit of subtextual anger and may derail a little here and there…

Ableist; this word caught my attention. I paused upon seeing it because I realized I live in a non-able sector of society. In this post I am going to wax somewhat on my life experiences as a person with “invisible disabilities”. Pardon the amended life history. I do think it is important because I know I have a unique perspective from “visibly disabled” persons.

I was diagnosed with Attention deficit disorder and dyslexia at age 9. That was in 1979, a time at which disability concerns were just starting to gain ground in education. In 1979 ADD and dyslexia were still largely in debate as being a reality. The facilitation of education for children with these disabilities was kind of rough-shod. We were provided some extra help, which involved being taken from the regular classroom to special education “classes”.

For me this meant being taken out of the class for one hour three days a week to be tutored in ‘compensation techniques’. Because of other issues, I was also taken to an outside facility twice a month for two hours for physical therapy. I, like many others, was a “short bus” person when taken to other locations for help. This automatically placed me on the outside of childrens’ culture. I was scorned for having to go to “special class” and being a “short buser”. In a few cases I was even emotionally brutalized by teachers because i was unable to focus which then filtered down to my brother when he had those teachers (he did not have any LDs)… a series of horror stories I will not recount here

My family moved around a lot in Illinois. This meant my therapy and assistance was not standardized because different school systems had different programs. When I started jr. high I ceased receiving active help and was placed in an extra study hall (for which I receive elective credit) to compensate for my inability to work as fast as others. This continued through high school as well.

In high school, I was told that I would not be successful in college because I read incredibly slow and could not type a paper. I cannot tell when I misspell a word and the eye-hand coordination crossover to the use of a typewriter made typing very difficult, especially considering the needed accuracy. I was told I should consider a trade or pursue a “vocation”. The problem with this was I had used all of the elective credits I could have put towards in-school vocational training in those study-hall-for-credit classes.

The assistive technology I had access to was limited. My family could not afford a computer. Even then, word-processing software available in the 80s was often as expensive as the computer itself and was not robust enough for my needs. Additionally, my family could not afford a typewriter. The only option was a hand held spell checker, which was useless to me because I cannot tell when I am misspelling a word. I remember looking through various office store catalogues longing for an LCD equipped digital typewriter with price tags out of reach for myself and my family.

I tried college in the late 80s but flunked out because the computer labs I had access to were available for only limited times I often could not utilize and because I was unable to read fast enough. Here i must state that my reading problems are a combination of the dyslexia and the ADD. It is difficult for me to read because it takes me so long to actually comprehend what I am reading (in an eye to brain sense) and because the difficulty of reading in the first place aggravates my ADD causing my mind to drift far and wide from the activity of reading. As my wife puts it, I am attracted to ‘shiny things’ because of the ADD and when I am reading everything and anything but the reading becomes shiny because of the clash of ADD and dyslexia.

A few things I deal with as a result of my disabilities include:

Unusual age inappropriate forgetfulness

Potential hazard driving (I can forget I am driving on occasion and I can read signs incorrectly)

Loss of vast expanses of time because of ‘a wandering mind’

Inability to stay on task (this is especially a problem given most jobs are repetitious)

Difficulty with speeches and presentations due to moving off topic without realizing

Forgetting to eat in spite of being hungry

Difficulty establishing long-term relationships (ADD is not only a short term problem)

Tendencies towards being inappropriately “chatty” (my mind constantly looks for other things to do)

Misplacing things as a result of being distracted beyond the “norm” (especially in the middle of doing things)

Switching tasks frequently and randomly

Getting lost easily

Forgetting I have to be someplace like work, appointments, classes, ect…

Slow reading

Misreading

Inability to clearly handwrite anything

Inability to recogniz words I commonly use orally in written form

Inability of spelling without assistive technologies

Inability to become and stay organized

Difficulty thinking sequentially

It is true many things on this “short list” are somewhat common but these things occur daily and even hourly.

These issues in my life are the result of a combination of two dominant disabilities that are not visible there for often not acknowledged. Most of the readings for this week focused on visible disabilities. Many of the topics and ideas highlighted about physical disabilities resonate with me but I cannot ignore the fact that people with debilitating invisible disabilities, like mine, were not discussed at all. Even among disabled culture those with debilitating invisible disabilities are simply not acknowledged. Those of us who have them are marginalized even by the visibly disabled.

For me this brings back into play previous week’s discussions of “meaningful access” of technologies for those of ethnic minorities and low income peoples. Even the most simple assistive technologies (appropriate wheel chairs, crutches, braces, glasses, or sufficient hearing aids) can be imposable for many of the people of the world to acquire, let alone advanced technologies like soundboards, digital readers, therapeutic surgeries or programs/procedures.

We talk about the digital divide as a definer of separate class and ethnic oppression/repression. What about the physical divide between the abled and the disabled? Architecture, in general, is a field that only takes up handicap accessibility when codes require it. If it were not for those enforced codes accessibility would not be considered. Grand constructions more often than not incorporate majestic tiers and stairways. Doors are constructed to be closed, not open; meaning they are often too heavy for physically feeble people to open.

Almost every job at the lowest levels of income are all physical in nature; from retail and food service to lifting and manufacture jobs. To get work above that level an advanced degree is required. Getting such a degree, even if is could be used to get a non-physical position, is often out of the reach of disabled persons. if a disabled person can get financial assistance the daily living requirements of many disabled persons is already 100% or more expensive than the “average” person.  How are these people, as Jeff states is the reality in Jeff on Cyborgs, in a position to compete with abled people. We start out below “level ground” and are mandated by every culture to rise to level ground. Only then can we compete.

As Cromby and Standen discuss in Cyborgs and Stigma: Technology, Disability, Subjectivity discuss, we, the disabled, are already always constructed as not able, as not human. We are the disability, not the person. Even if we can acquire intellectual skills for greater and more appropriate employment the “dis” precedes everything we do, everything we are.

As far as our brothers and sisters in low-income sectors and poor countries are concerned, they get the worst of it. the lives lead in those places of global society require physical ability due to the nature of the necessities of life below the poverty line. A disabled person on those households not only represents a disability for the individual, they represent a disability for their family and, in the worst cases, the entire community.

Even I and others like me, with our invisible disabilities, require expensive technologies for the most basic interactions with abled culture. Without my computers and their backups (I own several computers of various capabilities incase one or more fail) would not be able to write a simple letter, fill out an application for a job, and theoretically advance in employment. In most cases people with my combination of disabilities cannot acquire gainful employment that permits the purchase of assistive technologies. Even beyond that, according to federal standards of providing assistance, people with ADD and/or dyslexia are not granted support in getting necessary accoutrements or assistance for our disabilities. We are relegated to flounder at the lower echelons of financial class indefinitely. The physically disabled and severally mentally challenged have greater access to training in coping, job opportunities, general assistance than the severally invisibly disabled do.

Meaningful access can only be determined by the individual, not by an institution. First, though, an individual must be allowed to become aware of what can be meaningful for them. This is the ultimate problem across all aspects of class, race, and culture for those who are marginalized. They are rarely given the opportunity to understand even the connotation of meaningful in this context. Until something is done to allow this to happen, the plight of the marginalized will remain. The marginalized will only be relegated to being objects or subjects of discussion in theoretical frameworks, ideals, and concepts of progressivism.

The question I have for this week’s reading is the most important question I think can be asked in relation to this class and has been asked frequently, in a controlled hypothetical “chamber”… What can we do to alleviate this issue of not having meaningful access?

A second question I can ask is: When will we allow marginalized people REAL determinism and not State mandated faux determinism? It is possible, very possible to do this without condition but in all of the years of known civilization it has never really been done, not in a significant sustainable way. The playing field needs to be leveled out, permanently, across all cultures and nations.