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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This is a Down Syndrome Awareness Month blog hop!

Click here to read many other thoughtful posts…

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32 Comments on “Down Syndrome: Awareness to Acceptance”

  1. Mardra says:

    Holy Cow. I can see why you posted this in the middle of the night, this is a ton of great thoughts all put together as only you can package it. Lots of work that looks like it flowed from you like a river.

    Tricky to balance all of the contradictions that those we love both encompass and discover. Awareness alone will not acheive the balance we hope for, but I hope all of our truths will open the gates, as you say.

    Keep talking friend, keep talking.

  2. downssideup says:

    It’s a tricky path we walk isn’t it, we campaigners and pioneers for change. I too have done a lot of soul searching this DSAM but as Mardra says too, we’ll shine light brightly into all those shadowy corners and get there together. H x

    • jisun says:

      Very tricky. And still, I have so many thoughts swirling around, about the nature of alliance, theory versus practice, the role of capitalism, the meaning of “inspiration”… But those are other posts, I suppose. :) Off to read more posts in the blog hop!

  3. Galit says:

    I took the liberty of sharing this on my facebook. Awesome explanation of ableism!

    • jisun says:

      Thank you! I know we’ve disagreed on the topic, so glad to know on this, we agree. I absolutely don’t think there is anything wrong with talking about abilities, but it is the stratification and exclusion that I’ve never been ok with. And of course, this is just one take on ableism, informed by listening to and reading the ideas of many more wiser people than I am. :)

      • Galit says:

        I was having a conversation with another blogger about this. I think that acceptance and treatment are not mutually exclusive, but can come at odds with each other when the treatment is sought for a purpose other than the individual’s own quality of life (e.g. the convenience of caretakers).

        “I believe that the search for “cures” can only come from a place of equality. A “cure” from the point of view of caretakers is abuse. Only a cure that addresses the needs and aspirations of the person with disabilities him/herself is worthy of the name.”

        Does that seem like more a place of common ground for us?

        • jisun says:

          Yes, I’d agree with that statement. Have you heard about the teenager with autism whose vocal chords were cut (surgery)? That case comes to mind now as a troubling example of “treatment”. I absolutely think that there is a place for medical and scientific advance. After all, without that, we’d have no glasses, wheelchairs, speech devices, etc. But yes, a “cure” has to be self-directed, not directed by the capitalist forces of the economy, as I see it is now.

  4. Lisa says:

    Brilliant and beautiful. Thank you for writing this, my friend. Sharing.

  5. Theresa Shea says:

    To love and outrage I would add compassion. Perhaps that will be the trinity that inspires action. I am SO moved by the day-to-day kindness and courage of individuals (myself included, I hope). I tell my children that people are basically good, and I try to live by that belief. I ALSO tell them that our world would be pretty darn boring if we were all alike and all interested in the same things. Today on the radio I listened to a man who gave “art” back to a graffiti artist (TEMPT) who had ALS and could do nothing but move his eyeballs (the story was from 2008). First, though, he gave him the ability to communicate by finding a technology that would allow him to type, so to speak, with his eyes. THEN he helped develop a pair of glasses that allowed the man’s pupil to activate a laser beam that would then allow him to draw (the laser beam acted like a pencil tip and was activated by his pupil movements). Can you imagine being able to create art again after having it taken away from you? I was SO moved by this collaborative act of human ingenuity and kindness.

    What does this have to do with what you wrote? I guess it made me think about how great the human family really is. I was moved by what you wrote, and that’s one of the greatest things about being human: the ability to be moved.

    • jisun says:

      Absolutely, compassion! And here, I can’t help but think of the very different feeling of compassion versus pity, although I think the two are often confused.

      Being able to draw with a laser beam controlled with one’s eyes… wow. Technology can be an amazing thing when it comes from the right place.

  6. mummalove says:

    Wonderful post, Jisun. I always feel so un-intellectual after reading your well thought out pieces, but I guess that’s the beauty of each person having their own voice ;) Thanks for keeping me thinking xx

    • jisun says:

      Aw, this makes me feel a bit sad! I would never want something I write to make another feel lacking in something. I love your writing, and especially your photography (a skill that I don’t have!). But thank you for the generous compliment, it is nice to hear that the post was thought provoking for you. <3

      • mummalove says:

        Sorry, that was a very victim-like approach to what was actually a compliment… What I meant to say that I appreciate your writing, and love that you are able to be warm and familiar, whilst also insightful and intellectual in your approach. Thank you (and thankyou for the nice things you said in response ;) x

        • jisun says:

          Oh man, thank you for those kind words, made my day. And on a totally unrelated note, can I say that it still tickles me when you Australians say “whilst”? I love it. :D

  7. Cole says:

    Such a good and necessary conversation and sadly- this oppression still happens here where I live as a matter of daily practice. It wasn’t until I hit the school system age that I had to face it- up until then people’s “awareness” of the Quail’s Down syndrome was met generally with a positive response which I mistook for acceptance. As she grows older and I’m faced with institutional bias and discrimination in the education system of a 4 year old who other than the label functions quite similarly to her peers I’m struck by how acceptable the practice of segregating her based on the myths still is. It’s the folks who actually spend time with her that see that their understanding of what Down syndrome means is wrong- but they have to actually spend time with her to see that. My touting it does little- other than this- all of that positive affirmation she and I and her family have received in the last 4.5 years- well I don’t take that for granted- it’s given me a confidence that I NEED in order to stand up to the larger scale societal-accepted discrimination of her. My mother- she didn’t have that support- my older sister- she has profound mental retardation and has suffered greatly due to peoples conceptions of how it is acceptable to treat her. From her time at home as a child and the medical communities unwillingness to give her the same care as a typical child, to her time in an institution to her time moved back in the community. It’s horrific how she has been treated and how society has beat down my family so that they feel like they are begging to get her the care she needs rather than feeling good like they are advocating for someone. So I would have to say from my life experience- all the awareness and visibility- it has to help. The alternative is disgusting and disgraceful. It wasn’t until we hit the school years though that I realized the reality of how far we still have to go. The responses we have received entering into this larger system leave me to feel like we have stepped back in time 50 years ago.
    It is the ordinariness of our days that I share as my contribution to Down syndrome awareness in hopes that one day we will celebrate Down syndrome acceptance. But from where I stand- we aren’t there yet either. One of my favorite set of lines from David Hingsburger is this from here http://davehingsburger.blogspot.ca/2012/03/i-saw-someone-today.html
    He loved his wife.

    She loved her husband.

    They loved their child.

    Their child loved them back.

    A moment in time. A moment that was timeless. A moment that testified to the power of love, the power of laying claim, the power of family. Family.

    Sometimes love is a political act.

    Sometimes family is an act of rebellion.

    Sometimes hearts do just what they are supposed to do

    • jisun says:

      I worry about the school aged years for this very reason. The institutional and systemic oppression that I see down the road for LP scares me.

      I have been chewing this over in my mind, however. Does a person HAVE to spend time with a member of an oppressed group in order to understand and act from a place of human equality? Like for example, do I have to know an African American person in order to not be racist, is it a requisite? Just something I’ve been mulling over since I wrote this, and your comment really made me think about it more…

      • Cole says:

        In my version of a perfect world- no. Unfortunately this world is far from perfect. I think there are individuals that are raised in a way that they are capable of seeing the humanity of everyone. Unfortunately I don’t find that practice wide-spread. Human equality does not seem to be a general approach/practice/teaching in most societies in reality- even where it might be tauted as a blessing a virtue in practice it doesn’t seem to prevail. Group think maybe is the culprit? Maybe it’s the impact of stories- the fact that they come from all angles and they get inflated and refabricated and people mistake them for truth and fact rather than a single story.Perhaps one doesn’t have to spend time with each oppressed group to understand oppression as a concept, but if one hasn’t experienced it or been taught about it’s impact- what it is, well I’m not sure how they would understand it when there are other competing forces or if that has not been their experience. Once you understand what oppression is and the impact of it- I would think the concept would generalize. I would hope it would, I don’t trust that it does though based on conversations I’ve had with people who seem to fully see the awfulness of racial oppression or gender oppression- but think it is logical to oppress folks with disabilities- because- well they don’t see them as fully human I guess- I admit I’ve left conversations like that because they didn’t seem to be going anywhere- so I don’t know what actually motivated someone who clearly felt oppressed due to race and gender to feel like it was ok to treat people with disabilities poorly.

  8. Cole says:

    Great conversation- so necessary and sadly- this oppression still happens here as a matter of daily practice. It wasn’t until I hit the school system age that I had to face it- up until then people’s “awareness” of the Quail’s Down syndrome was met generally with a positive response which I mistook for acceptance. As she grows older and I’m faced with institutional bias and discrimination in the education system of a 4 year old who other than the label functions quite similarly to her peers I’m struck by how acceptable the practice of segregating her based on the myths still is. It’s the folks who actually spend time with her that see that their understanding of what Down syndrome means is wrong- but they have to actually spend time with her to see that. My touting it does little- other than this- all of that positive affirmation she and I and her family have received in the last 4.5 years- well I don’t take that for granted- it’s given me a confidence that I NEED in order to stand up to the larger scale societal-accepted discrimination of her. My mother- she didn’t have that support- my older sister- she has profound mental retardation and has suffered greatly due to peoples conceptions of how it is acceptable to treat her. From her time at home as a child and the medical communities unwillingness to give her the same care as a typical child, to her time in an institution to her time moved back in the community. It’s horrific how she has been treated and how society has beat down my family so that they feel like they are begging to get her the care she needs rather than feeling good like they are advocating for someone. So I would have to say from my life experience- all the awareness and visibility- it has to help. The alternative is disgusting and disgraceful. It wasn’t until we hit the school years though that I realized the reality of how far we still have to go. The responses we have received entering into this larger system leave me to feel like we have stepped back in time 50 years ago.
    It is the ordinariness of our days that I share as my contribution to Down syndrome awareness in hopes that one day we will celebrate Down syndrome acceptance. But from where I stand- we aren’t there yet either. One of my favorite set of lines from David Hingsburger is this from here http://davehingsburger.blogspot.ca/2012/03/i-saw-someone-today.html
    He loved his wife.

    She loved her husband.

    They loved their child.

    Their child loved them back.

    A moment in time. A moment that was timeless. A moment that testified to the power of love, the power of laying claim, the power of family. Family.

    Sometimes love is a political act.

    Sometimes family is an act of rebellion.

    Sometimes hearts do just what they are supposed to do

  9. Leigh Ann Arnold says:

    Love this. Reading through your comments and why is it that people have to spend time with Treyton (or anyone with DS) to change their views, not sure but we keep plugging away one person at a time! Nice to know someone like you is on this road with us! Keep thinking and writing it really spurs my thoughts!

    • jisun says:

      Thank you, mama! After some fluff posts that’ll maybe be my next one, because it really interests me. Does a person have to have a personal relationship to really accept someone with difference? Definitely makes it easier, but is it a requirement… Hmm…

  10. adrseattle says:

    Wonderful post. I love the mixing up of love and outrage, relationship and justice. Written with depth, capturing the complexities of “awareness” very well.

  11. adrseattle says:

    Reblogged this on Dancing with Down syndrome and commented:
    Fantastic Down Syndrome awareness post over at Kimchi Latkes.

  12. Thank you for sharing your experience and insights! The awareness you’re providing is, I think, precisely what the world needs!


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