Skip to main content

A close-up of a child's eyes. Only one eye looks at the viewer, the other is obscured.
How do we know ourselves?
M. asked me a question as I was tucking him into bed, just prior to our reading time. "Am I disabled? Or am I a child?"

The form was deceptive. It was framed simply. It was not a simple question. It was profoundly philosophical. Of course I was taken aback. But, it was an honest question. He wanted to know. Identity is important.

“You are a child. And you have a disability. You will always have to work around it. Like you do with your art.”

That was enough, for the moment. It was sufficient to settle whatever had been nagging his brain, pulling at his heart, enough to make him ask mother. Sometimes he will ask silly questions. Questions for which he obviously knows the answers. Those are the “mastery questions,” the “start a dialogue that is a familiar game” questions, the “annoy mom” questions. For the silly questions, a good solution is to turn the question back such that he must answer it himself: “What do YOU think that blah blah blah blah blah...?” Said with a smile, but not a sentimental one. Even if the annoyance bubbles up, he wants the conversation. If I manage myself, the conversation will change soon enough. I can gently steer it. He already knows that I will do that. Lord knows, I have done it many, many times. Am I skilled? Or am I trained?

But this digression deflects the depth of his question on this particular evening. He recognized his own implication in a constructed dichotomy: disabled/child.

KosAbility logoKosAbility is a Sunday 4pm(Pacific time) community series by volunteer diarists, as a gathering for people living with disabilities, who love someone with a disability, or who want to know more about the issues. Our use of "disability" includes temporary as well as permanent conditions, from small, gnawing problems to major, life-threatening health/medical problems. Our use of "love someone" extends to beloved members of other species.

Our discussions are open threads in the context of this community. Feel free to comment on the diary topic, ask questions of the diarist or generally to everyone, share something you've learned, tell bad jokes, post photos, or rage about your situation. Our only rule is to be kind; trolls will be spayed or neutered. If you are interested in contributing a diary, contact series coordinator postmodernista.

M. apparently knows the rules of culture. Night/Day, Male/Female, Young/Old, Country/City, Disabled/Child.

Was he taught this last one was a dichotomy? When, and for whom is it a dichotomy? Did I teach it to him? What about at school? The other kids, the non-disabled ones where he was “included” in the same geopolitical space of elementary school? Or did he recognize its construction for himself? Asked, and answered.

You don’t play ball well enough. You don’t play by the rules. You can’t figure out by a fleeting facial expression what someone is saying. You don’t belong here.

A little girl actually said the last, loudly, to his face. We were doing an off-campus play-learn group. I was really hopeful about that group of parents and their children. These were all kids he already knew from school, and they knew him. It would eliminate the awkwardness of ad hoc situations at the playground, trying the mix-and-match on the fly. Chatting with parents. Being positive. Sometimes a phone number. Hopefully, one of the rare return engagements.

But, whatever positive thoughts I was bringing to the play-learn group from school on that Saturday were immediately dashed by the princess of the home. Before M. even set foot onto the second floor to join the gathering, she leaned over the top of the stairs, saw him, and shouted, “You don’t belong here!!”

Right, then.

Of couse, she was gently corrected. Sort of. “Darling. That’s not a nice thing to say. M. is from your school.”

And that was all. There was no asking why she said what she did. And no opportunity to dispute what she really meant: that he was of the community from the school, but not part of the one in the house that afternoon.

In him, she saw no peer. Frankly, neither did anyone else, neither adult nor child. She just said it out loud, right away.

Disabled is not a child. Not a child that belonged here.

Oh, sure. Ambulatory. But fidgity. Bad at circle time. Doesn’t pay enough attention. Needs someone at his elbow every minute to help him. And that eye. What’s the matter with that? Oh, she didn’t mention that on that day.

But on another day, another child had.

We were at the playground and M. was enjoying the tire swing. And then he jumped off and went running to the structure. And then this one little boy arrived right behind him, and had a beautiful scooter. The little boy left it and went to do something else. So, M. looked at it. I was 10 feet away, making certain that he could not cause massive offense by taking it to ride. And he never did. Didn’t even touch it. But he looked. So the little boy returned to make certain that there was no inappropriate claim upon his prized property. And then he shouted, “WHAT’S WRONG WITH YOUR EYE????”

Just like that. In ALLCAPS. Bold. San Serif.

I looked to the mother, aghast. And pretty bugged, but you cannot call out a 4-year old kid at the playground. You can, however, give his mother “the look” with a cocked eyebrow. “Oh.... he’s just so CURIOUS...” she said, limply and not all that apologetically.

“It did not seem like a very curious tone.”

On other occasions, I had explained, very patiently, about the condition, and what gave rise to it, and the fact of his lack of sight in one eye. The blank gazes of this mother and the small gaggle about her made me pause this time. Then, yielding to the silent demand for an explanation of the difference that caused a ripple in the playground space-time continuum, I started to go into “educational mode” again. But this particular time I devoted rather less expression to the details because, well, what is the phrase? Yes. “Mean curiosity.” I had always thought that an odd idiom. But on that day it brought thunderous epiphany. It was created because of that particular combination--wanting to know because of wanting to know, but not caring. Just mean-spirited curiousity of the “why aren’t you normal, wait, I don’t really want to actually know the science of it” stamp.

The mother did not pursue any further conversation with me when I finished the brief educational exposition. Was she embarrassed? Not enough to apologize, certainly. She explained. Her son was “just so curious.” Ah. A budding physician.

Budding Physician followed my son relentlessly as he retreated to the relative safety of the tire swing. Staring at my son and his offending eye. Finally, perhaps sensing my inner combustion, his mother called to him and redirected him to another activity. Not long afterward, he returned and then set about climbing the geodesic rope structure next to the tire swing. I sighed inwardly. A manly display for my son’s further edification as to his not belonging?

“MMOMMMMMMMMMMMMMMMMMMMMMYYYYYYY!!!! HELP ME!!!!!”

The mother appeared, and with some effort plucked Budding Physician cum Errant Climber off the structure and set him down.

Without a word and quick as a flash, my son was off the tire swing, up the dome, on the top and down the inner portion of it. He came to me, took my hand and began to guide me toward the playground’s gate. He was ready to leave. I whispered in his ear “I am so proud of you. You are very wise. You taught me so much today. You gave that boy the best answer. You showed him that you could do something that he could not.”

That day, at least, in his own mind, my son erased the dichotomy that so many around him were relentlessly creating.

But that dichotomy is nonetheless there. And needs to be undone every single day. Like the stone in the story of Sisyphus, repeatedly and forever pushed up the mountain, that dichotomy that should not exist is there, a burden.

Am I disabled, or am I a child?

Originally posted to KosAbility on Sun Apr 20, 2014 at 04:00 PM PDT.

Also republished by Community Spotlight.

EMAIL TO A FRIEND X
Your Email has been sent.
You must add at least one tag to this diary before publishing it.

Add keywords that describe this diary. Separate multiple keywords with commas.
Tagging tips - Search For Tags - Browse For Tags

?

More Tagging tips:

A tag is a way to search for this diary. If someone is searching for "Barack Obama," is this a diary they'd be trying to find?

Use a person's full name, without any title. Senator Obama may become President Obama, and Michelle Obama might run for office.

If your diary covers an election or elected official, use election tags, which are generally the state abbreviation followed by the office. CA-01 is the first district House seat. CA-Sen covers both senate races. NY-GOV covers the New York governor's race.

Tags do not compound: that is, "education reform" is a completely different tag from "education". A tag like "reform" alone is probably not meaningful.

Consider if one or more of these tags fits your diary: Civil Rights, Community, Congress, Culture, Economy, Education, Elections, Energy, Environment, Health Care, International, Labor, Law, Media, Meta, National Security, Science, Transportation, or White House. If your diary is specific to a state, consider adding the state (California, Texas, etc). Keep in mind, though, that there are many wonderful and important diaries that don't fit in any of these tags. Don't worry if yours doesn't.

You can add a private note to this diary when hotlisting it:
Are you sure you want to remove this diary from your hotlist?
Are you sure you want to remove your recommendation? You can only recommend a diary once, so you will not be able to re-recommend it afterwards.
Rescue this diary, and add a note:
Are you sure you want to remove this diary from Rescue?
Choose where to republish this diary. The diary will be added to the queue for that group. Publish it from the queue to make it appear.

You must be a member of a group to use this feature.

Add a quick update to your diary without changing the diary itself:
Are you sure you want to remove this diary?
(The diary will be removed from the site and returned to your drafts for further editing.)
(The diary will be removed.)
Are you sure you want to save these changes to the published diary?

Comment Preferences

  •  Good evening, everyone, and welcome. (9+ / 0-)

    Anyone who scoffs at happiness needs to take their soul back to the factory and demand a better one. -driftglass

    by postmodernista on Sun Apr 20, 2014 at 04:03:40 PM PDT

  •  Upcoming Schedule @ KosAbility (6+ / 0-)

    APR 27 -  bigjacbigjacbigjac"Normal is Just a Setting on the Washing Machine"

    The last week of April is World Immunization Week & Vaccination Week In The Americas

    MAY 4 - OPEN THREAD NIGHT
    MAY 11 -  working title: "KosAbility: Our House & Home" by postmodernista
    MAY 18 - "Directory of Health/Med&Related DK Groups (links & profiles) by
                               mettle fatigue
    MAY 25 -

    May is Awareness Month for:  Lyme Disease  •  Celiac Disease  •  Systemic Lupus Erythematosus  • Mental Health  •  ALS/Amyotrophic Lateral Sclerosis (also known as Lou Gehrig's disease)  •  and National Mobility Awareness Month

    Over 18 million people in the US and Canada have mobility issues. 6 million of those with mobility issues in the US and Canada are veterans. People with disabilities constitute the largest minority group in the United States. More than 65 million people in the United States provide care for people with disabilities or a senior family member. 4.4 million Canadians reported having a disability with 56% over 75 years old. Researchers estimate about 2.2 million Americans use a wheelchair for mobility. And, as the population ages, the number of people with mobility impairments will increase by an estimated 22 percent over the next ten years.

    • 1st Tuesday in MAY is World Asthma Day •  May 12 is International Awareness Day for Chronic Immunological and Neurological Diseases including Neurofibromatosis  •  Chronic Fatigue Syndrome/Chronic Fatigue Immune Dysfunction Syndrome (CFIDS)/Myalgic Encephalomyelitis  • Fibromyalgia  •  Gulf War Syndrome/GWSMultiple Chemical Sensitivity •  May 18 World AIDS Vaccine Day • May 31 World No Tobacco Day •  

    JUN 1 - OPEN THREAD NIGHT
    JUN 8 - working title: "Quick Notes from the Patient Safety
               Movement & postmodernista's Dad's Case Study" by
                 postmodernista & mettle fatigue
    JUN 15 -
    JUN 22 -
    JUN 29 -

    June is LGBT Pride Month • June 5 UN World Environment Day • June 14 World Blood Donor Day • June 15 World Elder Abuse Recognition Day •  June 20 U.K. Stop CyberBullying Day • June 21 Int'l Music Day internationally

    And we're currently in the U.N. Decade of Education for Sustainable Development

    to achieve an improvement in the quality of life, particularly for the most deprived and marginalised, fulfillment of human rights including gender equality, poverty reduction, democracy and active citizenship.
    Second International Decade of the World's Indigenous PeopleWater for Life Decade & United Nations Decade for Deserts and the Fight Against Desertification

    Any or all of these —or anything else related...or different— can be a diary subject or an instant Open Thread Night topic or comment. We co-host/co-post with other groups, and we publish/re-publish diaries of interest across the week.

  •  that question might also apply to seniors (8+ / 0-)

    with cognitive disabilities

    Warning - some snark may be above‽ (-9.50; -7.03)‽ eState4Column5©2013 "I’m not the strapping young Muslim socialist that I used to be" - Barack Obama 04/27/2013 (@eState4Column5).

    by annieli on Sun Apr 20, 2014 at 04:07:47 PM PDT

  •  I have a friend/student/colleague (28+ / 0-)

    whose 11 year old has multiple disabilities. CP/wheelchair. Nonverbal, non-ambulatory. The kid is liquid sunshine. Once when he was 8 or 9 and his sister was 4, a total stranger walked up to the mom and asked, "What is wrong with him?" His little sister put her hands on her hips and demanded, "What's wrong with you? My brother is perfect."

  •  I seem to recall from years ago, (9+ / 0-)

    before the idea of "sensitivity training" was labelled as such, that there was an ongoing discussion in what might be called the "tolerance movement" in which the thrust was that the world is made up of all kinds of people and all kinds of individuals, and they all make a contribution where others are open to learning.

    Sometimes, as the notion went, the contribution simply consists of being "different" and that this is enormously valuable even without "different" individuals doing anything but be part of the public world, because by it we absorb the habit of mind by which differentness is understood as the diversity that is in fact normal in our species, our cultures, our societies, our cities, towns, villages...everywhere we got.

    In that viewpoint so long ago, the disabled contingent was saying that they welcomed and encouraged little kids and even older ones and adults asking them, "how come you are sitting in a chair with wheels instead of standing on legs walking around", much the same as the contingent of various people of color were saying that they welcomed and encouraged youngsters (presumably adults would have the info already) to talk to them saying, "your skin is a different color than mine, is that like my hair is a different color than mommy's?"

    The aim was to change the viewpoint from merely tolerance to acceptance and from acceptance to welcome and mutual appreciation. The understanding (or article of faith, so to speak) that diversity is our truest strength.

    All these years later, my general sense is that we don't actually have greater acceptance of diversity, and we really don't have welcome or appreciation, except among a very few who have continued to believe in it and share it around as best they can. In general, though, it appears that anxious backlash from those who felt that it diminished themselves, or decreased their own opportunities, has stalled that entire process out.  The process depended, I suspect, on a receptivity to self-criticism and to constructive criticism from others, and even to let nonconstructive criticism be spoken without lashing out.

    I'm not a parent and I've only studied a little in childhood development, so my thinking that youngsters kids absorb the attitudes and ideas of successful-looking people around them (adults, peers who are doing and having what the rest regard as worth doing and having, etc) is where "mean curiosity" and aggressive behavior ---verbal or physical-- largely comes from.  Youngsters who have absorbed a sense that there isn't enough kindness and caring to go around may be prone to reject other kids whom they see as "legitimate victims" they can safely exclude from sharing in the limited kindness and caring and other resources.  "Safely" in the sense that their actions of rejection won't be punished and may even be rewarded, if only by there being enough resources to go around that they themselves get some.

    At this point in time, "successful" as an outward appearance really does seem to be the key. A very class-ist key. A socioeonomic key.

    ~sigh~

    •  The education component of diversity (11+ / 0-)

      awareness that you point to was always my "go-to" response. The most recent commenter is obviously unaware of the many comments that preceded theirs. So, I never did gas off on even the meanest comment (which were made by adults, some even at my elbow). I was always polite, and I always had the appropriate educational response at the ready.

      Presumably, once the question is honestly asked, and honestly answered, does any inclusion occur? That would be what a diverse and inclusive community, even a provisional one such as people who happen to be at the park at the same time, would look like. Does the conversation continue? Does it exceed the talk of difference and lack and go into common interests or activities? The weather, even? Appreciating the sunset, the local sports team, the running of the grunion?

      Or does it just stop?

      I always tried to keep the conversation going. But, to do that, you need a willing conversational partner. These were, sadly, very rare.

      The worst thing, even more than the response to one's child as a moment for "teaching tolerance" for the more fortunate children is the social isolation even in cheek to jowl proximity.

      Darling, you didn't use canned salmon, did you?

      by JrCrone on Sun Apr 20, 2014 at 04:55:55 PM PDT

      [ Parent ]

      •  Having been greatly treated as different my own (6+ / 0-)

        self, almost everywhere, if for other reasons, my guess —based on greatly past experience (because I've been extensively housebound by disabilities about 20 yrs now)—  is that inclusion happens where and when there are shared purposes stronger than real or imagined differences that would otherwise result in exclusion.

        And I kind of think it has a fair amount to do with the social skills any individual develops or innately has for "winning friends and influencing people." I have some skills like that but recognized the actuality of them so late in life that I find them pretty hard to use.  Can if they're necessary to the good outcome of individual moments, can't on a steady unrelenting basis, due to having to deal at the same time with constant sensory overload.

        It sounds like you're no happier with the idea of "tolerance" than I am or than the folks of decades ago were who were trying to move it thru acceptance to welcome & appreciation of differentness.  It's a worrisome concept, as if everyone virtuous will just "put up with" the differences of others as if the differences are blemishes it's "nice" and "courteous" to ignore.

        I try to be tolerant of and "nice" to my "normal" and "mainstream" acquaintances, what few I've had. To be brutally truthful, I find them limited and boring. It often seems to me that they've had life just easy enough (by conforming?) that they've had no stimulus to develop whatever innate gifts or talents or yes, differences, they might have. On the other hand, there is certainly some relief in having nothing more challenging than a sunset or the weather to exchange conversation about.

        •  When I was in a training program (0+ / 0-)

          for disability advocates, we had a presenter who talked about her son's experience in school - he had CP, especially her need to intervene with goals at every step of the way. Example - using recess for him to "walk" to the playground, using up all the time so there was no time for him to play, so he missed the time to interact with the other kids.

          She said something so important - that interventions were made to make him fit into the comfort zone of others, so she had to insist and every turn - you're not going to make him able to walk, so just use OT and PT time to help him do the things he can do better.

          Or in the words of the diarist, to be a child, not to be disabled.

          Being attentive to the needs of others might not be the point of life, but it is the work of life. It can be ... almost impossibly difficult. But it is not something we give. It is what we get in exchange for having to die. - Jonathan Safran Foer

          by ramara on Tue Apr 22, 2014 at 08:00:49 AM PDT

          [ Parent ]

    •  And sometimes this can be offset: (15+ / 0-)
      I'm not a parent and I've only studied a little in childhood development, so my thinking that youngsters kids absorb the attitudes and ideas of successful-looking people around them (adults, peers who are doing and having what the rest regard as worth doing and having, etc) is where "mean curiosity" and aggressive behavior ---verbal or physical-- largely comes from.
      Years ago (mid 90s), I became the parent of a child born with Down Syndrome.  And on the spectrum (yes, it is possible to have a dual of DS/ASD).  Non verbal.  And oh so many etcs.

      I recognized that the Pre-K years offered the only chance for "mainstreaming" opportunities given the pervasive developmental delays & so I embarked on journey to provide this for my child.  My child needed to have the opportunity to be around same age kiddos/peers for a variety of reasons & these needs could not be fully met by the special needs pre-school attended.

      First up was a Mother's Day Out program offered by a local church.  I offered to beg on bended knee just to give it a try.  Fortunately it turned out that one of the beings that started this program had known me when I taught (Special Ed) & intervened.  

      The staff issue was fear.  I understood this unspoken fear & suggested a trial of 1 day a week & offered whatever supports they might need.  I knew that once they had a chance to spend time with this adorable wee kiddo that the fear would dissipate.

      I was startled to discover how quickly this happened; by week two they offered a fulltime spot.

      Easier then as my child was the same size as the other wee adorable "typical" kiddos.  At that age (2-4) the other kiddos did not even notice the "differences".

      The next op occurred when my child attended an after school daycare center run by a family who believed in inclusion.  

      Through this setting, my child was offered a chance to attend newly state implemented Pre-K program.  Again, there was a fear factor however the Pre-K teacher was upfront about her lack of knowledge working with any disabilities.  The refreshing part was her candor & her willingness to "give it a try".

      This wonderful being researched & then prepared her class for my child's arrival mid semester.  She took the time to find an age appropriate book to read to them about different disabilities, answered questions & asked for volunteers to be a peer helper.

      Everyone of her 20 something 4 year olds volunteered. At times, they fought over who would be my child's buddy, lol.  Not a single child was afraid nor confused about why my child could not use verbal words and they all learned the sign language my child used to communicate.

      Recently, my child went to the first high school dance created just for the kiddos in special ed.  The theme was "You are loved".

       The dance had a DJ, food/pizza bar, candy bar, a separate activities/game room set up, photo booth, photo props, souvenirs.  The commons area was transformed into a magical place.

      This was completely organized, set up, paid for & chaperoned by high school peer helpers-geeks to football stars to beauty queens. All interacted with, subtly guarded, conversed with each guest in honest and beautiful ways.

      Though very a very special event, it is not a one off in the high school my child attends.  I see the acceptance in the halls beit staff or typical peers.  There is a pervasive atmosphere that gives one hope for the future.

      I like to think that these lovely teens were once upon a time read to by a teacher in Pre-K & guided about "disabilities" or played alongside kiddos like my child in a Mother's Day Out Program......

      •  PS: Apologies for many typos, sigh. Meant to add (7+ / 0-)

        that as a result of the inclusion experiment with my child, this church (that we do not attend) went on to provide same for other kiddos with different abilities as well as provide inclusion programs throughout their church services that continue some 16 years later.

        I believe that the fear of the unknowns surrounding different abilities can be offset, as evidenced in the small examples given of our life.

        With exposure and education, positive awareness or acceptance was achieved by the different age groups in our story (Pre-K-teens-adults)

        Now to figure a way to zap the rest of the population with similar teachable moments, sigh.  

        Perhaps a good start being the peer helper programs now in many schools beginning in Pre-K through High School.  Or by serendipity as in our case..

  •  I am so sorry for your troubles (18+ / 0-)

    I find myself with no advice to give; our children had disabilities but they were not ones which were immediately noticeable unless you knew the child.  Then you would notice the head swiveling, the explosiveness, the time bomb waiting to explode and realize that all was not well.  However the casual observer would not pick up on this so we mostly received condemnatory statements regarding why we could not control our children or why did we not discipline them

  •  An addendum (10+ / 0-)

    I hope that the underlying theme of this diary--the construction of our identity via reception and recasting of it in our respective communities-- is clearly expressed. The  pain and anger in response to unnecessary and extremely public rejection of a child for things over which he had no control cannot be glossed over, or edited out of my personal mothering experience. If nothing else, I wanted to be honest.

    The question that precipitated this diary was made about 3 days before I started writing it, but the memories that it resurrected were more remote-from 5 and 8 years ago. Of course, he has suffered many rejections since then, but few that all witnesses would agree were explicitly due to his disability.

    I do hope that the construction of identity with, around, and in opposition to disability can be part of our ongoing conversation here at KosAbility.

    Darling, you didn't use canned salmon, did you?

    by JrCrone on Sun Apr 20, 2014 at 05:32:17 PM PDT

    •  A lot of folks here are parents (9+ / 0-)

      of kids with disabilities, also in most of the other health/medical groups in DK.  My general perception is that the concerns you've brought up are pretty constantly in play in the background, and often specific in the diaries and discussions too.

    •  My oldest sister lives her life, complains about (11+ / 0-)

      her ills, asks for help obtaining things that require driving and matters of taste (such as this week - I need to find so we can shop for spring/summer clothes) and explicitly tells us when she will do something vs. wants another member of the family to do/help.

      She's mentally retarded and almost 50 years old, went into a parallel education path (i.e., towards trade emphases) after elementary school and has almost always seen people who treat her as being "different" - but, not in a helpful, constructive way - as being odd.  That is, she rightly has seen such people as being the ones who exhibit problems that could use solving.

      Her identity is simply that she is a woman, living with her boyfriend, getting help from family, obtaining public assistance, working a few days each week through a county mental health/support program and who needs new pants - so, can I take her soon?

      Like many of us, what she is happens to be part of who she is and colours how she thinks about herself.  But, mostly on her own terms - and, I think that's an important aspect of anyone's sense or reality of identity.

      For example, my middle sister lived almost haunted and embarrassed by her mild, palsy-like and emotional swings - symptoms that grew into near-constant worries which eventually consumed her personality by her later 20s.  It went even more sour on the flipside, after she was placed into managed care homes where most of her peers were people she did not aspire to be similar to and even resented - her level of analytical intelligence never waned, but her emotional symptoms caused such awful distress and health placement situations that my father was always fighting to make more optimal (after she became too difficult to manage in later years at home).

      It was only in the final year of my middle sister's life that she seemed to finally find an implicit peace within herself, having lowered all the expectations that she'd learned from others were to be the many measuring sticks of her being "accepted" by people she aspired to be like/with.  People who never mattered in her daily life, but images of ideals that she couldn't leave behind.  Her imagination was vast and that became a double-edged sword in the latter half of her years, unfortunately.  I was glad we got to know her all over again, the fun, intelligent sister and daughter who had always been inside, before a sad lack of dutiful medical care - by her then-managed living home - eventually led to a sudden passing.  She died with an identity that was akin to what she had earlier in life: based on how she felt about herself as a person, her family and things she accepted were possible to do or think about each day, without worrying about what may-be or might-have-been in deeply regretful ways because the larger society advertises almost all value via perfectly sculpted images of bodies and minds.

      "So, please stay where you are. Don't move and don't panic. Don't take off your shoes! Jobs is on the way."

      by wader on Sun Apr 20, 2014 at 06:45:41 PM PDT

      [ Parent ]

      •  Thank you for this (8+ / 0-)

        Part of what gets me wound up is the unnecessary suffering like what you describe in your middle sister's experience. Your oldest sister sounds pretty rockin'.

        Our larger 'official' society seems panicked by disability and polices the margins of the valued behaviors and appearances. Otherwise, whence the fear of difference and rejection of those who do not, or cannot, conform?

        Darling, you didn't use canned salmon, did you?

        by JrCrone on Sun Apr 20, 2014 at 07:07:54 PM PDT

        [ Parent ]

        •  For most neurotypicals (4+ / 0-)
          Recommended by:
          wader, JrCrone, worldlotus, mettle fatigue

          I think this is innate.

          whence the fear of difference and rejection of those who do not, or cannot, conform
          They can learn to overcome it, though, but they have to first recognize the impulse and then think about its fundamental unfairness.

          Neurotypical people often lack social skills, too, but many seem quite resistant to learning to improve them.

      •  JrCrone, wader's "the larger society advertises" (6+ / 0-)

        may very well be where this pressure comes from.

        Back in my 1960s college years, a recommended book in sociology was entitled, approximately, "Manners, Mores, and Morals", a book detailing the premise that every society/culture involves a continuum of promoted behavior and despised behavior, was an eyeopener for me, because I had been doing volunteerism from about age 9 onward that put me in organizational work settings, among adults many of whom were paid staff, and that book and class explained a lot of changes in society that really had me at sea.

        the wikipedia page seems to describe pretty similar to what i recall, as the range where manners particular to the society/culture start to take on a moral dimension, as if "well-behaved" in social terms, and the capacity to choose and control every tiny aspect of one's appearance and conduct in every moment becomes considered akin to 'virtuous' behavior, and anything less or different becomes eligible for pointing out as inferior, and subject to ridicule and disgust.

        Basic to that is the fact that it's disgusting for a person of lower status to accidentally (i.e., without control of own's own actions etc) make others feel uncomfortable (and by that to draw the proper punishment of derision) but it's also a social prerogative of high status to intentionally make persons of lower status uncomfortable and marked for punishment purely for being of lower status, as if a lesser human being.

        Movies, television, the blogosphere, and most of all ADVERTISING decree what is desireable appearance and behavior under what circumstance. They also exploit human herd instinct (which involves some degree of seeking for approval from one' peers) to drive us to invest emotionally and financially in trying to have and be what's shown to us as desireable and approved.

        There are a lot of wrinkles in this that i find absolutely fascinating, but probably most people don't, so i'll leave it at that, i guess.

        •  It potentially explains much even beyond how (4+ / 0-)

          those considered disabled are treated, as well - i.e., LGBT, other colours/nationalities, low/no income, etc.

          I realize we're all in a serious topic here on potential identity impacts from culture when disability is involved, but it's fascinating that sociological studies have long revealed a human tendency gone extreme in libertarian/right/Republican people concerning their increasingly narrow fight to define whatis normal and acceptable in today's society through money, politics, unabashed hate speech and even threat of force.

          "So, please stay where you are. Don't move and don't panic. Don't take off your shoes! Jobs is on the way."

          by wader on Sun Apr 20, 2014 at 09:37:08 PM PDT

          [ Parent ]

  •  and later it will flip (6+ / 0-)

    And your adult disabled son will be seen as a child because of the disability.

    Ain't it grand?

    “He said it was better to belong where you don't belong than not to belong where you used to belong, remembering when you used to belong there.” ― Terry Pratchett, The Wee Free Men

    by LoreleiHI on Sun Apr 20, 2014 at 08:57:19 PM PDT

  •  Some thoughts from a friend, the late Ed Roberts: (4+ / 0-)
    "Whatever it is that makes you different is pretty irrelevant. It's who you are as a person that's the most relevant thing of all."
    .

    See video with transcript:

    Effective Strategies for Social Change: Ed Roberts Speaks at the First Partners in Policymaking Session 1 (May 1, 1987)

    More about Ed:

    Ed Roberts, Activist

    Includes links to the related documentary,

    WE WON'T GO AWAY

  •  JrCrone, I cannot begin to express how much (5+ / 0-)

    this post has moved me.  Or taught me.

    My soul wails at this:

    He recognized his own implication in a constructed dichotomy: disabled/child.
    My child cannot verbally express what you child has pondered.  However, despite my child's intellectual delay, I noted a dawning recognition that manifested in withdrawal in specific settings beginning at a certain age.  Example playground or social gatherings with familiar "safe" others.

    Dawning awareness that my child could not "talk", could not keep up, could not..that continues to this day albeit with a lessening of withdrawn noted for so many years.  And a courage now to try not to withdraw in certain environs.

    I called it an awakening.  And it broke my heart.  As does this new courage.

  •  Dichotomies are the invention of lazy brains. (3+ / 0-)

    They don't exist in nature. Even so-called "identical" twins, the result of one egg splitting in two aren't the same. A mirror image doesn't accurately reflect. Everything and everyone is different.
    Variety isn't the spice of life; it is life.
    Everybody's got disabilities -- some things s/he can't do. Everybody's got abilities -- things s/he can do.
    Everybody's somebody's child, until s/he's orphaned. And even then the sense of being cared for and valued may not depart. Of course, if it was never there to begin with, being orphaned is a blessing. One no longer has to feel guilty about returning dislike for dislike.

    Some parents, for no apparent reason, dislike their children. Some people dislike their own kind. That's why they try to subjugate them and make them behave.
    Perhaps the culture of obedience is nothing more than an elaborate scheme to disguise an inexplicable distaste for one's own kind.
    My using that word, 'distaste,' makes it sound as if I were talking of cannibals. Perhaps I am. At base, human husbandry, the exploitation by people of their own kind, is sort of a lesser-included version. Human husbandry stops short of actually consuming the prey. Sublimated cannibalism = economic exploitation.

    'child' and 'disabled' are in different categories. 'child' is a noun base on the natural relationship between progeny and parent. 'disabled' is an adjective referring to functional characteristics -- what an organism can/cannot do. If there were dichotomies, these two would not qualify because they are not in the same class to begin with. You might want to explain that to your son at some point. Also, that his being a child will never change, but his abilities and disabilities will vary. I'd refrain from using the adjective 'disabled' because it usually implies an impersonal malevolent force (disabled bombs are the exception).

    http://hannah.smith-family.com

    by hannah on Mon Apr 21, 2014 at 01:30:53 AM PDT

    •  His being a child WILL change (2+ / 0-)
      Recommended by:
      JrCrone, mettle fatigue

      He will become an adult.

      Unfortunately, many people view/treat disabled people as if we were children. We are talked down to, told that we are 'inspiring' for simply living, often told that we should not reproduce or even be sexual.

      “He said it was better to belong where you don't belong than not to belong where you used to belong, remembering when you used to belong there.” ― Terry Pratchett, The Wee Free Men

      by LoreleiHI on Mon Apr 21, 2014 at 10:32:46 AM PDT

      [ Parent ]

      •  and the older you get, the more you're treated (2+ / 0-)
        Recommended by:
        LoreleiHI, JrCrone

        like a child as well, 'tho that's probably more to do with resentment about being told the fallacies of superficial thinking and superficial living than anything else.

        nevertheless, "elders" and "seniors", especially in their 80s and 90s who brought themselves and their families through much harder times and remember the skills and intelligences of the Great Depression and ww2 homefront, even if more by observation than utilitilization, are a resource we're utterly wasting.

        and, ironically, they are from a time when society was far more composed of people widely different in body and mind than now.

        •  Yeah. (3+ / 0-)
          Recommended by:
          JrCrone, gmats, mettle fatigue

          I get all kinds of weird looks for some of the things that I do that I picked up from my grandparents, but you know what? Saving the ends of vegetables and using them to make stock, making larger batches and putting up the extra (instead of throwing them out!), and growing herbs make it so that I have more to eat. That's not a small thing, as I'm on SSI, and my state is taking it's sweet time getting back to me about SNAP (it's been 1.5 months now, and yes, I've been in and checked on the status).

          I'm lucky that my Grandmama remembered the Great Depression, and was willing to teach me things. Without it, I'd be a whole lot closer to starving.

          “He said it was better to belong where you don't belong than not to belong where you used to belong, remembering when you used to belong there.” ― Terry Pratchett, The Wee Free Men

          by LoreleiHI on Mon Apr 21, 2014 at 05:04:27 PM PDT

          [ Parent ]

      •  So true, but we are not powerless (0+ / 0-)

        I believe in the power of disabled people creating  community of our own.  I believe in being visible and speaking out.  Able-bodied types don't yet see us as people, but I believe that is changing and will continue to change.

  •  Been there. (6+ / 0-)

    My ADHD kids were ostracized quite a bit.  As they get older, they can understand that their disabilities are a part of their lives, but not their whole lives.

    Still...they live in a world where people have greater struggles with them.  I told them at a very early age--as soon as they began talking--that no one was to be made fun of because of their physical appearance.  Period.  You can ask respectful questions, but that is that.

    I'm fascinated by the mother at the playground.  When I became a mother, I became a bit neurotic about how others saw me through my children....to the point where I was trying to always settle down two hyper children constantly.  I would have been mortified if my 4-year-old had said that to another child.  I guess some folks don't have the same neurosis!  

    But as time passes, your child will come to see that we all have our disabilities.  Some of them are more obvious than others.  

  •  Soon he will need his own answer (5+ / 0-)

    One of the marks of maturity is being able to acknowledge what we do well, what we do poorly (but may enjoy, or have to do anyway), and what we can't do at all. (We all have those.) I once listened to a highly-educated and interesting speaker, who had a pronounced speech defect. He began his talk by saying something like, "Many people find my speech difficult to understand, so if you're having a lot of trouble, feel free to raise your hand and I'll try to be clearer." That cleared the air, and no one did raise a hand -- we just listened more intently, as you would to someone with a heavy foreign accent.

    So as he grows, your son will need some formula that works for him for answering rude passers-by, many of whom do not mean any harm but are just ignorant and awkward in their own way. And your actions affirming all the things he can do seem just perfect.

  •  Our apples are a little different sometimes.... (8+ / 0-)

    I have a now 22 year old daughter. She is the light of my life, and the life in my heart.  She was born perfectly healthy, high apgar scores and all.  A good eater, a happy, smiling, energetic child.  Then a brain stem tumor changed her.  We suddenly found ourselves having to constantly explain why she wasn't like all the other apples. We suddenly found we had to recalibrate all our expectations, hopes and plans for her life and our lives. Nothing that comes before this instant ever prepares you for this. No one ever discusses what you should expect when your child, your little apple, falls from the tree and is different than all the others.  She has bumps and bruises, scars and mottling but she is still so very sweet and delicious.  We lost friends, but more heart breaking, she lost friends. I think my sweet, sick little girl scared the moms and dads. I guess they were even less prepared to talk about or absorb the implication of life threatening and altering illness in a child than to have the birds and bees discussion. But the friends that have stayed with us are more than friends, they are a gift, a blessing and more than family. It has been a struggle, but she is in college now, almost finished and hoping to get into a graduate program to become an art therapist.  That damned tumor took something away, but it changed something in her brain and she can draw, she sees colors and loves them and makes things out of them with lines and brush strokes.  Now that she is older, she is among people who can stop themselves and edit their words before they hurl them at others.  They know that there is much more to a person than what lies just beneath the surface.  It sounds like you are giving your son all the right tools and teaching them how to use them.  It will not be easy, it never is being different. Somewhere along our journey, I don't know exactly when, I stopped thinking of my daughter as disabled.  I started thinking she is "other abled".  She needs to do things differently than all the other apples, but she CAN do so much in her way. Our friends and family and the wonderful school she went to worked to give her dignity and respect and enable her to have faith in her abilities and strength to persevere. Love, joy, blessings and courage on your journey together.  

  •  Thank you for an insightful and (6+ / 0-)

    especially well-written diary.

  •  Human being or property? (4+ / 0-)

    If you have been following the news, similar questions have arisen in the case of Justina Pelletier.

    Am I a person, or, because I am ill, am I simply someone's property?

    In the case of Justina Pelletier, she was originally diagnosed with mitochondrial disorder.   One night, she was having very bad gastrointestinal symptoms, and it was a snowstorm, so her regular doctors at Tufts sent her to a doctor who was familiar with her case at Boston Chilldren's Hospital.  She was transferred by ambulance due to the storm, and thereform, she was received into the ER, instead of seeing her doctor.  There, a young inexperienced psychiatrist decided that her illness was somatoform (all in her head -- she's just a lazy whining kid), accused the parents of "medical child abuse", called protective services, and committed the kid to a high security psychiatric ward.   She was kept in the high security psychiatric ward for a year, for her "somatoform" disorder, a disorder normally treated on outpatient basis.   She has only been allowed the most limited contact with her parents.  Indications are that her condition has deteriorated in that time.

    The questions that this has raised are numerous --

    Is it OK to take a child away from her parents, simply because the parents have allowed the child to receive treatments that were prescribed by and performed by a doctor who is licensed by the state?

    Is it OK to take a child away from her parents, because the parents have chosen to follow the advice of one doctor or set of doctors over another?

    Is it OK for the state to lock away a child, simply because the child is ill?

    Is it OK to deprive a child of free speech, simply because the child is ill?

    Is it OK to deprive a child of the right to assembly (to meet and speak with the persons she chooses, including her own family and friends), simply because the child is ill?

    Is it OK to deprive a child of her education and her exercise of religion, simply because she is ill?

    Is it OK to force medical treatments on a child against her will, simply because she is ill - to literally force her to allow things to be done to her body that she does not consent to?   Has anyone even told her she has a right to refuse?

    Some people have compared her situation to criminals in prison, such as the Boston Marathon Bomber.    In some ways, he has more "rights' than she does.

    Is she a disease?   Is she a child?  Or, is she a person with human rights?   The situation demonstrates that these are dichotomous choices.   Because you're a child, because you're sick, it is judged that you are not a human being with human rights.   Instead, as a sick child, she is an object to be possessed against her will.   Based on how the case has proceeded, it seems that our society has decided she is NOT a person with human rights.   This is deeply, extremely troubling to me, as my daughter has an illness somewhat similar to the one that this child has.   Her family was accused of "doctor shopping", but any family with a child who has a lot of medical problems can attest that hunting for a good doctor is one of the biggest challengs that we face.  Her parents are accused of medical child abuse, because the illness is not visible or easily diagnosed like my child's, and because she has undergone invasive procedures, as did my child when she got a bier block for her pain.  

    One of the interesting points about this case is that Justina is fully old enough to know exactly what is happening to her, that she has been made a prisoner because of her illness, and that if she was only about 24 months older, she would have the right to make these decisions for herself, and the right to refuse treatment.

    24 months away from being a human being with civil rights.

    One disease away from being a human being with human rights.

    She is on the wrong side of the fence.   It has been made abundantly clear to her that she is NOT a human being with human rights, and how well she knows it!!

    And, it was not a four year old child who made her status as a non-human clear to her.   It was a confederacy of adults who have committed this travesty.

    •  What a truly terrible situation (2+ / 0-)
      Recommended by:
      mettle fatigue, gmats

      I hope that this case is swiftly resolved in Justina's favor. It has gone on far too long already. Of course you worry.

      And that is such a major issue. Once a child has drawn the attention of the State, it is always a worry. All it takes is one person who decides all the professionals so painstaking brought together by the caregivers are wrong.

      Darling, you didn't use canned salmon, did you?

      by JrCrone on Mon Apr 21, 2014 at 10:54:53 AM PDT

      [ Parent ]

  •  Recruiting assistance (4+ / 0-)

    It is  human nature that four year olds stare, and teenagers watch curiously and ask if they can help.  

    One of the most traumatic things for my daughter to experience was that the school environment was overly-stimulating for her sensory sensitivies and would trigger massive flares that made her cry, and crying in front of her classmates was excruciatingly emotionally painful for a reserved young girl, who would prefer to cope with her pain in privacy.

    It was a huge relief to just get out of the school, because it was just too much of a crowd to manage to explain adequately to everyone there, to satisfy their curiosity.  Curiosity is a survival trait, but in addition to enjoying the upsides, we have to cope with the downsides, especially when dealing with a disability.

    What helps is to have friends who understand it, who have had it explained in detail, and as her circle of friends widens, she has friends who will take other friends aside and explain it to them for her, if she doesn't feel like doing it herself (or is incapable of speaking at that moment).    I think that that has helped the most -- having a small army of friends and family to be allies and buffers in moments like that -- like you, the parent, to be there answering questions and encouraging him in coping with it.

  •  Love your diary (6+ / 0-)
    I looked to the mother, aghast. And pretty bugged, but you cannot call out a 4-year old kid at the playground. You can, however, give his mother “the look” with a cocked eyebrow.
    Man, I call out kids on the playground all the time.  Where I live all the parents are fiddling with their cell phones the whole time and paying zero attention.  My son has muscular dystrophy and needs a lot of help with things like climbing up to the top of the slide so I don't have that luxury.  I've moved slowly from not saying anything to being polite to being playground daddy.  
  •  Your child is lucky to have you (2+ / 0-)
    Recommended by:
    cv lurking gf, JrCrone

    because you can help him to navigate this world and maintain his sense of self-worth. Back in the "good old days" of the 1950's when I was growing up, some people felt it was necessary to make these sorts of remarks to handicapped children in order to toughen them up for the real world in which they would always be outcasts. I felt so lucky when the 1960's happened and such things became "politically incorrect."  Unfortunately, I know all too well the attitudes that go with this type of thing.

    If your son knows that you are on his side, that will count for a lot. As he grows older, I hope he will be able to develop his own way of dealing with this, but you should know that what you do and say will always be his guide. You've made a great start. Keep it up!

    •  Thank you for your thoughtful comment. (0+ / 0-)

      I grew up in the "nicer" 60s and 70s, (yep, I'm an old mom!) but there were still residual attitudes about "toughening." Strangely, we are still having those arguments in the Bullying discourse...

      There were special education classrooms at my elementary school. One day, a boy with Downs looked at me, shouted, "Hey, Ugly Face!" I was shocked. I was 9 or 10 and had seen that boy occasionally at recesses, but never interacted with him. Certainly had never teased him or any of his classmates.

      But, as an adult, and a mother of a child with differences I can now recognize that was just the thing- what I thought was benign indifference was just indifference. And he called me out for it.

      Darling, you didn't use canned salmon, did you?

      by JrCrone on Tue Apr 22, 2014 at 04:01:03 PM PDT

      [ Parent ]

  •  When we are children (2+ / 0-)
    Recommended by:
    LoreleiHI, churchylafemme

    nobody wants to let us "have" that, but now that I'm way past it, people treat me like an overgrown kid.

    "People are more than the worst things that they do,"--Chris Hayes

    by chicating on Mon Apr 21, 2014 at 06:17:05 PM PDT

  •  I came late to disabliity - I was thirty-nine (2+ / 0-)
    Recommended by:
    JrCrone, gmats

    when a car ate my foot. I wear a sports prosthetic, not one which sacrifice function for looks. I've had children run up and scream to their parents, "Robot! She's a robot!" It cracks me up. Little boys take it from the side of a pool when I've gone swimming. Having a prosthesis, wearing one, is odd and unusual in this world, especially in the U.S. Having a visible disability puts me in a minority. I don't mind (most of the time) explaining to other adults and particularly children, my alternate transportation device. I want them to understand and to learn acceptance, eventually become oblivious. My choice, obviously. I have much more understanding of what people with disabilities go through now that I'm one. However, I must say, for me, it's not the worst thing in the world; the constant pain is, despite its low level (after seventeen years, I accept it never will stop). Your child is different. We're all different. We are all equally different. Some of us just have more visible differences. At some point, perhaps your child will be willing to explain it other children, or perhaps, as he did on that playground, he'll just show them who he is, and forget those physical differences. Unfortunately, he has been given the opportunity to be a teacher in this life, at too young an age. It won't be easy, but he also has the opportunity to grow one of the biggest, wisest hearts - way before his peers, and even some of their parents.

    Best to you both.

    "You must not lose faith in humanity. Humanity is an ocean; if a few drops of the ocean are dirty, the ocean does not become dirty." Mohandas Gandhi

    by cv lurking gf on Mon Apr 21, 2014 at 08:37:01 PM PDT

  •  Maybe a little lacking in the flesh, but (0+ / 0-)

    sounds like it's offset nicely with a helluva Mom.

    LG: You know what? You got spunk. MR: Well, Yes... LG: I hate spunk!

    by dinotrac on Tue Apr 22, 2014 at 02:50:10 PM PDT

    •  You are nice to say so (0+ / 0-)

      but my point of greatest pride is enough self-control to have never risked arrest for assault on a couple of parents on other occasions... ;)

      There is no small number of parents and caregivers of children with disabilities with my same skill-set and far, far more patience and ability than I possess.

      Darling, you didn't use canned salmon, did you?

      by JrCrone on Wed Apr 23, 2014 at 11:41:58 AM PDT

      [ Parent ]

Subscribe or Donate to support Daily Kos.

Click here for the mobile view of the site