September 25, 2011

Ambling on the grassy knoll

This is a minor attempt to find a smoking gun in an interesting “Disability Identity” series, penned as separate yet connected posts by William Peace, Claire Roy and now Phil Dzialo, so that a finger can be pointed at the culprit. Perhaps an undertaking that goes over my head but since coincidentally, while doing some blog maintenance, I ran across a draft of a post written in July that, for whatever reason, was not finished (but not forgotten) the idea that it might illustrate where I believe some attention should be placed in the discussion crossed my mind. Time constraints in editing my show as a somewhat rambling style. 

The idea of disability identity of W. Peace, as I understand it, encompasses that of the perception  of disabled persons, the label that they carry which is invariably something negative (even when proclaimed to be positive, see "Overcoming disability") and the empowering stance of self-realization that should first and foremost come from the disabled person themselves, as a struggle for their human rights, leading to change the perception of that identity.

Claire argues that her daughter’s form of disability precludes her from having such a perception of self, seemingly putting her in another category.

Phil presents a philosophical point of view in his response, which is not to say it isn’t based on years of utterly pragmatic experience in dealing with his son’s extreme disabilities (or physical and mental compromise as I like to phrase it).

So we have how others perceive difference (the label of W. Peace) and the public ramifications of such attitudes as well disabled persons' problematic perception of themselves, in Claire’s case by proxy of her daughter, though Claire clearly states she does not know how her daughter sees her ‘disabled self’ (never the less see Claire’s soon to be famous statement “Disabled identity: it f**king sucks”), and there is Phil who speaks (“A person is not what they possess, what group they belong to or what they believe”) of the intrinsic value of human nature which is often made ambiguous by the appearance of difference by association. 
On occasion life brings us little anecdotes that allow us to hone philosophical discussions in the social arena. Such an example comes with the draft of my July post:

          "The world's strongest man competition, where these hulking figures, training in mainly powerlifting techniques but with strange objects such as cars, poles and tractor tires filled with cement, is not a sport. At least that is what I was told by a youngish, very athletic looking chap at the local gym. "If you can't run a kilometer and back, your not even an athlete" he said.  A woman, exercising next to him, disagreed and chimed in that “different people are made for different things”. 
"What?" she asked. "So a person who has a disability but participates in athletic competition is not an athlete?"
He wouldn't be swayed. "That's different, these strongmen had a choice. They should have chosen a proper sport: swimming, like I did."

Skewed perception leads to prejudice.

Life can be hard to all kinds of varying degree. When the parent of an extremely physically and mentally compromised child tells of how difficult their lives are to let people know, because when you are stuck inside your home for extended periods or always rushing off to hospital or testing, people generally don't pay attention to your absence. You need to attract some attention because sometimes its just too difficult to do alone, physically, never mind the emotional side. Others simply need to share, to let the 'regular' folk know that their son's cerebral palsy is a daily struggle. Learning to walk properly not being a given or their daughter's drop seizure a harrowing experience each and every time, without exception.

But to those that don't get it such an explaining parent is seen as a complaining parent. In the end you are left with a process of complaining because the inability to relate to the subject properly has erased the relevance of context and replaced it with a bland generic look at the process of complaining.

We aren't left with much in the face of such behaviour which at best is considered to be indifference. I've tried to explain things to people I have dealings with every week. People who I have trusting relationships with, respectful relationships. But I see that either I am very bad at explaining or people are viewing the situation of my caring for my son through their own frame of experience. Natural to an extent but when something obviously falls outside of your frame of reference, if you care for that person then you will make an attempt to understand.

"Really? Oh, I had no idea!"  And then once again placating silence from the other side. No hand given in assistance, no further interest. "I was afraid to ask", apparently  preferring to leave a person in dire need rather than subject them to the horror of being asked what kind of help they need.

Despite all that I feel that it is necessary, under most circumstances to try and soften the description of life with my boy, Segev, even here on the blog… I feel the pressure to find a more pleasing “hook”, to allow my son’s problems to appear somehow more accessible, so that perhaps mainstream society can relate, to include him.

A little while ago I posted a video of Segev with music in the background. He was happy and feeling good at the time. The music actually played for him while I filmed and though his reaction to music is miniscule he never complains and on occasion he smiles slightly when I put some on.  What the music also did was to cover the noise of his loud, stressed airway. The physical effort to breath was reasonable, I would not have put up the film otherwise, but it was labored and sounded like Darth Vader on a bad day.

A few days later I received a nice comment on the blog post of how good it was to see Segev like that. Unfortunately Segev had that same day already spiraled into a heart-wrenching condition of extreme pain that lasted for several days.

I try to keep things balanced, describing both the positive and negative of Segev's life and my thoughts on issues surrounding his condition. It can be difficult, even for us as extreme parents/caregivers, to fathom what other such parents are going through in their own unique situation and we above all attempt to be politically correct because we have an enormous amount of respect for other parents, regardless of how much we can relate to the particulars of their difficulties. We try to set our prejudices aside, and that is certainly a big thing, a very, very positive thing. Nevertheless respect within the community is one thing but in the end there must be a way for us, this new communicating generation of "disability pioneers" to bring about change where it is so desperately needed."

The underlying problem appears to me to be prejudice.
Prejudice denies respect, doesn't it? Prejudice is based on a combination of quantifiable psychological motivations, personal background and, I believe, a kind of primal fear. Prejudice is in essence a defense mechanism nature has given us in order to establish our difference from the ‘other’ group. We have this instinct in order to give us a better chance at survival. No matter how intricate or obfuscated the outward manifestation of prejudice, at its core is this particular characteristic of a survival mechanism.

If we accept that we must have this conduct in some form though, acknowledging the power of it in controlling, or at the very least strongly influencing, our behavior, there is a sense of responsibility. Through education, for example just as the three blogs mentioned are doing in a most positive way, the perception that there is a threat at all can be influenced.

I know that to use the word threat seems rather strong in discussing the psychology of how ‘regular folk’ react to disability. But there is an effort by some to further deflect a true understanding of the fear by lending a utilitarian spin to the eugenic aspect of the issue.

That argument, that I’ve seen put forward in one form or other in many an internet forum, goes something like this: a stable, growing, progressing society cannot allow itself to be overly concerned with small minority ‘elements’ which in the end will not produce any quantifiable gains for that society and in essence, especially if allowed to procreate, will damage the well coordinated effort to accommodate the main group. Some influential people don't stop there. Some bio-ethicists who, by insinuating that the killing of severely compromised (disabled) babies, or better yet fetuses, is not only desirable but the ‘right’ thing to do, create an atmosphere further making disability seem like something akin to the bubonic plague. We condone a great deal of life threatening thrill seeking behavior because it is a choice. We extend the life of the elderly, chronically ill, especially if they choose it. But when it comes to children we say, 'no, they have no say in the matter', and we take their voice away in a way that can only be described as 'extreme prejudice'.

Of course many people become disabled due to accidents later in life, many without any cognitive deficit. Naturally W. Peace’s approach rings the most true from that particular perspective since he himself is…I was going to put ‘disabled’, then ‘crippled’ but of course his point is that he is disabled only if he is the proverbial apple compared to the orange. ‘Differently-abled’ may seem like a ‘cop-out’ description to some, lacking both empowerment (in the end very few actually want to be ‘different’) and direction (sustainable argument for inclusion in society as partner with equal footing).  A while back in a post I made a point of the relativity of this concept of disability. 
Part of the problem is in my opinion the lack of understanding of the psychology behind the disinclination for acceptance and part because disability has such a wide spectrum that spearheading an issue in a more comprehensive way becomes impossible; my child’s needs are not that of Claire’s, which are not those of someone like W. Peace or, again, Phil’s son Adam. Changing the perception of disability, as Claire stated, is often necessarily a grass roots effort. Never the less, without support from government, broad changes will be lacking. More laws might be necessary but if I understand William Peace’s description of life in the US correctly, there is very little enforcement of already existing laws. 
In the past there have been efforts, with perhaps limited understanding of the needs of disabled, to build institutions, homes, support services. Some of it is quite good. On the other hand many places have been closed down or need to be closed down. 
You could look to Holland, worth a visit for those that seek guidance in how caregiving and rights of disabled could work, but the cultural differences with the USA are enormous. What works in one place will not necessarily transfer well. Change must come at a level of cultural consciousness apparently. An admittedly slow and often incremental affair. 

But I fear that there is a bigger issue here than just identity. Chronic care elderly are much in the same boat. From what I have seen and heard I’d say the boat is more of a dinghy and it's filling up with water quickly.

“Prejudice”, while a very important concept doesn’t have the impact that “Respect” does. Everyone seems to agree prejudice is wrong...and that they aren't prejudiced.  Perhaps respect is the same, everyone believes they are respectful (as long as they feel they are treated as such). 

Still, respect is, I believe, the key. Finding ways to recognize and implement its strategy on a daily basis. Very difficult since I too have my built in prejudices.  For example, as I wrote in response to a post by Phil, I have a prejudice against his son, Adam. Adam frightens me. I am not just saying this. Other compromised children, frighten me. Perhaps because I know just how complicated things can get, just how critical minutiae of assessment and treatment can be, what responsibility is involved. 
But it can also be the appearance. On many occasions I have sat with a room full of children with severe physical deformities (don’t bite me on the choice of that word, please) during lunchtime, while each child was being fed. The staff happily munched away in unison but as to myself I couldn’t bring myself to eat along with them, just physically couldn't do it. It felt like being inside of a hurdy gurdy with a strobe light flashing in my eyes. My brain was simply overloaded with incongruent lines and odours as well the assault of odd spastic movements and sounds. None of it was familiar, despite years with my son, meeting other disabled children and even having had the privilege to treat them. All this points to the following, that sensory input, our perception of lines and shapes when not aligned with known patterns make us wobbly.
That uncertainty immediately allows a kind of self preservation to kick in, just as you can see an MMA fighter subject to a flash knock-out and then proceed to try and grapple with the referee’s ankle after the fight has been called, his opponent already celebrating his victory. It shuts down our ability to corroborate the unknown.

So I would be trepid in approaching the care of Phil’s son, because I do not yet understand what his needs are, how to approach him.  I want that understanding. I want to get over my fear. I need to find how to address his needs because it is what I do in my vocation, which finds no better situation to manifest itself than with such children.  I guess that takes a bit of courage, some curiosity, but certainly belief in the one thing which will allow us, human beings in organized society, in this complicated crowded world of ours, to not only survive but to prosper. In searching for avenues, none guaranteed to bring success, what I am hoping to achieve, in a language unique to the severely disabled, is to respect Adam. 


  1. I am deeply appreciative of your ability to synthesize the many issues on this topic...I have no doubt that this discussion continues in many places and will continue so. Yes, respect for all humanity and attempting to know and understand that great ocean of diversity is a singularly key element. Thanks for this very thoughtful and insightful post!

  2. Dear Eric,
    After I wrote my book CERAMIC TO CLAY I found myself unable to venture very often into the land of blogging, a world Phil and I ONLY entered after I published the book. I read your posts and, today, I absolutely MUST comment. I am awestruck by your honesty and your willingness to address the most sensitive issues. I, honestly, believe that you should submit this post as an article (should you be able to find an appropriate magazine or newspaper.) You speak the truth with such clarity and humility.
    By the way, there have been therapists in Adam's life (long term) who have certainly demonstrated fear - not that they would ever acknowledge this. I could feel it, see it and never knew how to respond. . . This was the last place I expected to experience fear.
    Keep writing, Eric - thank you

  3. I found you through Phil's blog. I agree with Sharon that you should try to get this published. You bring insights and respect to a sensitive topic. Your post deserves a wider audience especially since respect for differences seems to be missing in the general population today. It is almost feels like we are going backwards at times. I hope this isn't the case. Phil and Sharon have enriched my world by sharing Adam's story and now they have brought me to your blog and more food for thought.

  4. I'll see what I can do and @D.S. hope you enjoy the ride.

  5. Dear Eric, I agree with Sharon and D.S Walker, that you should get this published. (I can't recall if you have ever read Sharon's book, but if you haven't you should pick up a copy).

    Well just popping by to give you and Sergev a huge hug.



  6. Hey, very nice site. I came across this on Google, and I am stoked that I did. I will definitely be coming back here more often. Wish I could add to the conversation and bring a bit more to the table, but am just taking in as much info as I can at the moment. Thanks for sharing.

    Pediatric Wheelchair

    Keep Posting:)