Down Syndrome: Awareness to Acceptance

What is “awareness”? How can awareness be helpful? Can it be harmful? Where can it lead? October is National Down Syndrome Awareness Month. As I’ve watched and participated in various awareness efforts, I wrestle with the concept and all it entails.

Will an awareness month for my child’s genetic condition help create what I really want—a place at the table of a fully inclusive society? Can the “awareness” alone possibly give rise to the monumental shift that our society needs?

Myth Busting and the Power of Imagery

Awareness can teach that Trisomy 21 is not a disease, nor is it a medical issue in and of itself.  Individuals with Down syndrome are not predestined to think or act in specific ways simply as a result of carrying 47 chromosomes. Just like any other human being, how that 47th chromosome manifests in a person’s body is highly individual, can be positive as well as negative, and subject to environmental influence.  Children languish in neglect and flourish with love and attention. Life expectancy changes with medical attention and scientific advances.

In other words: people with Down syndrome are… people. Easy enough to say, but more difficult to unpack when confronted with hurtful or ignorant myths in our mainstream culture.

Awareness efforts tend to confront these negative forces in three main ways: 1) explaining the scientific underpinnings of Trisomy 21 (often involving lists of associated medical conditions), 2) discussing developmental delay (often slanted toward emphasizing the typicality of people with Down syndrome “despite” the existence of some developmental delays) and 3) generalized statements of affirmation and/or positivity regarding Down syndrome.

Taken together, these efforts generally give rise to a positive image of what life with Down syndrome can be like.  On the one hand, this kind of imagery can be helpful.  When my son was diagnosed with Trisomy 21, my lack of any meaningful, let alone positive, image of Down syndrome was very scary for me.  Yet, on the other hand, I worry that awareness efforts that center heavily on such imagery can inadvertently crowd out the basic humanity of the people in an attempt to re-image the syndrome.

Lists of medical risks may only serve to conflate Trisomy 21 and disease, when in fact they are not one in the same.  Emphasizing the developmental milestones that a child might reach close to a typical time frame may only serve to emphasize the milestones that lag behind.

If we are looking to awareness as a form of re-imaging, does it run the risk of compounding the negativity that it seeks to dispel?  I’m not sure we can reasonably expect the general public to do the hard work of separating out the person from the syndrome, particularly if the message our own community sends out mixes the two.

Visibility as Affirmation

Yet, I also see awareness as a form of visibility to be a powerful act of resistance against oppression. While we are thankfully decades removed from routine institutionalization in this country, it is still a practice in other places around the world.  Institutionalization occupies one extreme end of the spectrum: the ultimate in invisibility and powerlessness.

In contrast, an excellent example of visibility as affirmation is the New York City Buddy Walk that ends in Times Square. I have seen picture after picture of people with Down syndrome, smiling proud in public. The act of broadcasting the faces of people with Down syndrome in such a iconic, public space can be powerful and transformative.

I am here. I am worthy. I am loved.

Parents also “share” their children’s pictures on social media in much the same way, as a celebration and affirmation of worth.  Similarly, taking your child with Down syndrome to your older child’s classroom creates an image of Down syndrome for the other children, and that act erodes the insidious belief that a child with Down syndrome has no place in public education, i.e., public life. Imagery begets visibility, visibility begets affirmation.

Dismantling the Gates of Ableism

Ultimately, the goal is to confront the 800-pound gorilla in the room: ableism.  To be clear, ableism is not just some silly word that disability scholars invented to complain and be angry.  Ableism is a real—though often misunderstood (if not entirely ignored)—force that profoundly shapes our society.  To me, any awareness campaign that doesn’t address the root of exclusion—ableism—closes its heart to the call for true acceptance.

Recognizing that ableism is not limited to only those with disabilities brings us in step with other civil rights communities, thus giving us strength. Ableism, at its core, defines all people by their abilities—physical, intellectual, emotional, even social—and seeks to stratify worth based on false judgments.  Unworthy people, by ableist logic, deserve to be deprived of full participation in society.

Women can’t be rational so are better off subservient to men. African Americans can’t follow rules so must be imprisoned. Jews can’t be generous so deserve none in return. People with autism can’t emotionally connect so remain unknowable. LGBT people can’t be moral so do not deserve families. Poor people can’t work hard so are unworthy of compassion. People with physical disabilities can’t be whole so can never be beautiful. People of faith lack logic and open-mindedness so do not deserve to hold opinions. People with intellectual disabilities can’t comprehend, so meaningful inclusion is impossible.

Ableism thus touches us all.  Gay men, rich women, poor white Americans, for example, all experience privilege and exclusion in unique ways.  So too with disability, although perhaps disability is additionally unique to the extent it transcends all of the demographic and socio-economic lines that define these other marginalized groups.  In the end, we are all humanity’s children struggling for passage through the gates of ableism to true acceptance.  Rather than trample each other in the struggle, why not recognize those gates for what they are and dismantle the ableist thinking that creates them?

Knocking at the Gates of Acceptance?

Awareness can get us to the gates of ableism, but with no guarantee of passing into true acceptance.  A quick look at other civil rights movements teaches us that awareness alone does not guarantee equality.  No amount of awareness—or even forced inclusion—can bring about genuine acceptance and equal treatment.  Dismantling those gates requires power.

Why? Awareness need only involve passivity.  One can generate awareness, without any action on the receiving end, as if by packaging a gift (or image, if you will), and leaving it at the doorstep.  We can label it, describe it, and hold it out, but cannot force someone to open the gate, accept the package, and examine its contents. Awareness is a knock at the gate with no guarantees.

I believe that individually, human beings want to accept each other, but the gates are too heavy.  Those gates are heavy with privilege, power, and misinformation that erect barriers between people where none need exist.  The cure and prenatal testing industries are two sides of the same coin; the needs, values, and choices of individual families have been eclipsed by the almighty dollar.  The social services industry keeps itself afloat by relying on a message of deficiency in order to blur the line between needed supports and forced dependence.  Our educational system insists that inclusion is not always possible so offers cheaper, segregated settings rather than creating radical change.

People thus get left outside the gates, and it’s hard to push through.  Awareness alone may amount to no more than a passive, polite knock; we will stand at the gates waiting for crumbs of acceptance but never enjoy the real thing.

The power of love and outrage

What can dismantle those gates?  Love, outrage, and human connection.

They may seem at odds with one another, but I believe that love and outrage can hold hands to create an awesome power that can move through those gates to true acceptance.

I’m outraged that families are pressured to submit to prenatal testing for the sole reason of selective termination.  I’m outraged that my child could be deemed unworthy of an organ transplant because of his diagnosis.  I’m outraged that parents must fight to prevent the routine segregation practiced by so many school districts across the country.  I’m outraged that once included, no meaningful support is given to some children, so that they float amongst but not with their peers.  I’m outraged that adults with Down syndrome cannot obtain meaningful employment at fair wages.  I’m outraged that a child’s abuse and a man’s homicide are blamed on their genetic composition.

Still, I love.  I love as an act of resistance.  I will even love those who hurt me, as fellow human beings, as I walk away from their painful attacks.  I love, to say, yes we are all cherished members of the human family.  I love to create the strong web of human connection that holds us in times of pain, outrage, and exclusion.

October is Down Syndrome Awareness Month.  Let’s celebrate people with Down syndrome as an act of love and affirmation: You count, you are worthy, you are valuable.  Let’s educate with love and compassion to blow away the dark shadows of ignorance. Let’s shout our outrage at anyone who would exclude people with Down syndrome from our human family, through action or inaction.

Light the path of awareness and tear down the gates to acceptance.

Ferdinand Knab - Das Schlossportal

Ferdinand Knab – Das Schlossportal


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