Monday, October 21, 2013

Guest Post: The Sum of One

Today's guest post is by the person who runs Down Wit Dat, a DS advocacy page. I invited her to take the early week essay slot because this month is DS "awareness" month, and all of us in the Autistic community know (say it with me): Awareness is not enough. I think that as you read her post, you will find that our two communities have more in common than we realize. - Mike

I am an ally.
I am a nurse.
I am a parent.

It may sound a little odd starting out like this, but these are parts of who I am.  Much like being Canadian or 5'10". These are my biases.  I am not, as of this writing, considered to have a disability.  I do have a child that does.

One of my twins, my middle child and second son, has Down syndrome.

October is Down Syndrome Awareness Month in the United States and I'm stepping up.  Not to spread awareness, with it's shiny merchandising and kitschy T-shirts, but to advocate.

Hard, as I'm fond of saying.

Although Down syndrome (singular tense) is the most common genetic variant, only one in 800 or so people will be born with it.  That's not a lot of people, statistically.

Down syndrome is highly medicalized, highly stigmatized and regarded most commonly as a collection of characteristics and conditions that can be boiled down to the existence of an extra chromosome,  specifically a triplication of the 21st (hence the term Trisomy 21).  This can be found in all of the body's cells or some of them, depending on the type.  It is considered a visual disability as most people with DS have some of the same facial and body characteristics.   It's considered a learning disability and a developmental delay as those with DS develop memory slower and differently than those without.  In the early years, especially viewed in a medical context, it is treated like a physical disability due to slower physical development and conditions such as hypotonia.  Every person with Down syndrome is as varied as everyone else, both physically and mentally.  People with DS (the descriptive chosen by self-advocates) are the product of their upbringing, religion, culture and socioeconomic status as much as any other member of society.

My son and his typically developing sister will be three in February.  At this moment, she is doing what any able girl-child at two is doing:  walking, talking, getting into mischief.  Her brother is no less mischievous, yet he is currently learning to stand independently and is hesitatingly taking his first steps around furniture.  Although we have no problem communicating, in developmental language terms he has a handful of confirmed words and signs.  Who he is and what he is capable of varies greatly, depending on who you talk to.  To many, he is considered to be severely disabled.  In some circles, he is "low functioning".  In our family's world he's a toddler.  Cut the kid some slack--not because he has DS--but because he just had a giant-assed hole in his heart patched up in April.  He's also a boy, who even in the able world, statistically develop slower than girls.

With all this medicalizing, stigmatizing and physical recognition of Down syndrome, there is a lot of hatred and misinformation floating around that dates back to antiquity, when DS was still referred with such terms as "feeble-mindedness", "Mongolian idiocy" and "retardation".  Care is still regarded as something for the person, not with the person, and can range from paternalistic at best to controlling at worst.  As a result, the current care plan for a new baby is to throw whatever "therapy" is applicable at a given time and see what sticks.  Sometimes this includes intensive physical, occupational and speech therapies coupled with a variety of herbal supplements... and even things such as antidepressants in order to meet developmental milestones.  Others include a more child-centred approach, based on play with frequent evaluations by PT, OT and ST.  This is the mode we use as it is in-house and more adaptable to our lives, our needs as a family and our parenting approach.  Some parents refuse all therapies for their children and are met with a great deal of resistance as a child "maximizing his or her potential" is seen as imperative.  The reality is, the developmental milestones that would apply to a 'typical' child should be thrown right out the window and the child allowed to develop at their own pace with gentle guidance, not force.  The cognitive and physical delays vary greatly from person to person.  As it stands right now, meaningful inclusion is the single best approach for all children.

Stereotypes abound with Down syndrome, some of which have a miniscule nugget of truth in them.  Many continue to be perpetuated by parents, professionals and lay people.  People with DS are often depicted as extraordinarily loving and caring and having high levels of empathy.   In reality, as visual learners, reading faces and mimicry are survival and communication skills that are learned early on.  "Super strong", "all look the same", bolting, not liking clothes, preternatural attraction to bodies of water are all "things" in the world of DS.  The person with DS who graduates college and encounters the same major life events as you or I (such as falling in love, getting married, getting a job)  is still considered an abnormality and to the general public, people like my son are uniformly ridiculed and considered akin to vegetables.  Hence the "potato" memes you will find everywhere on the internet.

Unlike other intellectual disabilities, there is a prenatal test for chromosomal related conditions such as Down syndrome.  It is roughly estimated that somewhere between 60 and 90% of Down syndrome pregnancies are terminated, a sobering statistic regardless of your views on abortion.  Access to healthcare remains spotty globally and those of us in the western world do not always get to take credit for the "best way" to "treat" those with Down syndrome.  Many would love to see a cure.  Many feel that elimination is a cure.

Self-Advocacy in the DS world is still in its infancy.  On one hand, we have such programs as Voices at the Table (VATTA), an adults living with Down syndrome committee sponsored by the Canadian Down syndrome Society.  On the other, we have numerous Facebook pages which claim to be run by people with DS, yet are instead written by their parents.  By many organizations, everyone with DS is considered a self advocate, which is about right, yet this includes imagery of children who are nowhere near the age where they can consent to such things.  A person is considered to be advocating by buying groceries, by simply being.  I'm not advocating for women for simply breathing, yet as a feminist, it shapes my perceptions and I advocate by calling out prejudice.  Newspapers print stories of teenagers with Down syndrome who get to go to the prom with neurotypical peers.  They use phrases such as "overcoming" and "despite" in relation to DS.

To combat the ignorance and hatred, some of the parent advocate community push back heavily with 'positivity', often in the form of inspiration porn imagery, pedestal ableism and sadly more 'othering'. Down syndrome is marketed, made more palatable and easier to digest for the general public (in the hopes that creating an overall positive, homogeneous space will change people's views).   Although large quantities of positive images, memes and videos may seem to be a good thing, they often spring from many of the stereotypes about DS in the first place (such as always smiling, always happy, placid children), and in the long run end up to be detrimental and promote partial visability.

Ethan Saylor has been gone for almost a year now.  No one expected him to say no, to stand his ground and try and argue his case, to advocate for his own rights like so many of us do on a daily basis.  For this, he died face down in a movie theater, his larynx crushed by off-duty police officers.  He is not the first person to be completely underestimated and misunderstood by the public or pay the ultimate price for having Down syndrome.  He probably won't be the last, either.

Adults with Down syndrome are still routinely infantailized, spoken of in inappropriate childish terms and treated like "forever children".  It wasn't until the 1980's that the routine institutionalization of those with DS ended;  young people are still routinely housed in nursing homes that are not properly equipped or trained.  In the disability world, independence is often gauged by what you can do on your own instead of being allowed to make your own decisions.  Adults with DS are often prejudged as being incapable of this as well.   From our child's birth, we parents are taught that we are grieving "the loss of the perfect baby".  I won't deny that there is often a degree of shock or surprise in such a diagnosis.  I also won't disagree with the fact that everyone, depending especially on experience and how they feel about the intellectually disabled, will react differently.  I will argue however that there are a lot of reasons why those early days are perceived as difficult, not the least of which is a high probability for a stay in the NICU, where a significant number of all parents develop symptoms of Acute Stress Disorder and Post-Traumatic Stress Disorder.   Worry, lack of sleep, micro-sleeping, feeding concerns, recovery from birth/surgery, multiple births... these things all contribute to one's state of mind.  Yet, within the first critical hours, we are taught to love the baby and dislike the chromosome.  It's no wonder that so many parents remain conflicted about their children well into adulthood.  It's hard to step over the threshold into acceptance when you hate the syndrome in the first place. You would be surprised at how many sources I hear this from.  Often the same people who share the megawatt-smiling imagery.

In all honesty, I have no idea what the future is going to look like.  I don't know if my son will speak aloud.  I don't know what he will be able to do independently and what "behaviours" we will encounter.  I don't know this for my other two children either, frankly.  What I do know is that regardless of any of this, he will be my son, respected and loved as a whole person, just like his sibs.  Many would like to contend that Trisomy 21 "does not define my child".  I don't agree or disagree with this statement, because either way, it is the wrong way to approach this diagnosis in the first place.  As my son is still a child, I get to select his clothes for a little while longer.  I may get to pick what he eats for the next couple of years.  I may decide what therapies he does or does not receive or where he does not go, at least for just over the next decade.  However,  I don't get to determine how he defines himself or what characteristics about himself he finds to be more important.  That will be up to him.  Its his right to show us what parts, what privileges and intersectionality he wishes to emphasize of his humanness.  In a world that sees everything he does and everything he will ever do through a easily-identifiable Down syndrome filter, the one thing I will assert is his humanity.  That I will most definitely do, and will continue to do so until he tells me he can take it from here.

There is no quick and easy summation of Down syndrome. It is not a list of symptoms, diseases or statistics.  It is not a chromosome.  It is a microscopic part of a person, with likes, dislikes, a sexual identity, race, creed, colour, nation... whathaveyou.  There is only a person at the end.  A sum of one.

That's the only kind of awareness we really need.