A Problem with “The Down syndrome” Narrative

In the Down syndrome (Ds) community, there are those who oppose awareness campaigns citing the “disability porn” problem.   The basic argument being that people with Ds are not always happy, cute, “angels” and they should not be used as instruments of inspiration.

I agree – to a point.  I fully support the right of anyone who wants to share their photos. I also believe that we should be able to share our own stories, the way we see them.  I do, however, appreciate the fact that there is a stereotype out there that needs to be proven wrong.

When a stereotype becomes an expectation, as it has in this case, it becomes dangerous.  When someone acts differently than expected, the general public doesn’t know how to react. (i.e. Ethan Saylor)

The problem is, when people within the Ds community share information that is real and truthful, they are criticized for putting all people with Ds in a bad light.

I recently designed and posted short bits of information on medical issues that might be seen in adults who have Ds.

Hearing Impairments in adults who have Down syndrome

 

Some of the response I got was positive:

  • “right on time, going to dr. in the morning”
  • “Extremely helpful, thank you.”
  • “I for one am extremely grateful! My brother is soon to be 55 and numerous times I have seen many on various DS sites/groups with older loved ones. They NEED this information. It is better to be armed ahead of time then we know what to look forward and how to be proactive. Our doctors are not knowledgeable so we have to be and that is what an advocate does. So good work!”

Some of it was not:

  • “the way the information is presented makes the “journey” seem sad and depressing. I think it could have been presented in a much more positive way.”
  • “I know these are supposed to be helpful but with a 2 year old- they are scary.”
  • “It certainly reinforces seeing Down syndrome as a “medical problem” and wouldn’t be the message I would send to new parents. It’s very much a “medical model of disability” approach, and I don’t think it does anything to address bias against our community.”

Not all information is happy.  Does that mean we shouldn’t share it? There’s a possibility that some think this type of information should not be made “public” – that it should be available for those who go looking for it, but it shouldn’t be “forced” on those who turn to social media for support.  From the discussions I’ve witnessed and been a part of on social media lately, I’ve learned that a number of people use these sites to get help with their caregiving.  Questions come up daily from people looking for medical and even legal advice from people who have been there.  While I don’t think anyone should use social media in place of professional advice, I do realize that some people don’t have access to the same level of support as others.

Another issue that I’ve been attempting to bring to people’s attention has pretty much fallen flat.  I feel it might be another aspect of the same problem.

There are statistics that show that people of color who have Ds have a MUCH shorter life expectancy than those who are Caucasian and have Ds.  It’s not happy news.  But, is it important.  The “news” is over a decade old.  I was confused when I first heard it because I couldn’t understand why it took so long to get to me.  Now I think I know.

 

#RaceAndDownsyndrome

I’m passionate about getting this information out there to a wider audience; to start the conversation.  I believe it’s the only way we can come up with solutions.  I’m guessing that the national organizations have been working on this issue but have come across the same types of resistance that I have.

Hence, the petition: Life expectancy for people of color who have down syndrome is less than half that of whites. Ask our national organizations to make it a top priority to find out why?

Change.org

 

These groups survive by serving their constituents’ needs.  If they believe that the community doesn’t want to hear this type of information, their hands are tied.  The petition was not meant to insinuate that the groups are at fault.  The answer to this monumental problem is within the community itself.

We need to stand up and say “This is important.  We need more information.”

 

Some might dismiss the study because of its age and claim that any information that old relies on the dismal reality of institutionalization.

Again, I agree – to a point.  The truth is that the study goes up to 1997.  A study in 2012 had similar findings:

“Non-Hispanic black children with Down syndrome were twice as likely to die during childhood and adolescence compared to Non-Hispanic white children with Down syndrome.”

Twice as likely to DIE

People don’t want to hear it.  But that doesn’t make it go away.

Jamie Foxx has been quite vocal lately about Ds and his sister DeOndra. I attempted to put the two issues together.  The headline “Jamie Foxx Raises Awareness of Down Syndrome” was apparently happy enough to get the piece shared on social media.  The end of the article directed readers to the petition.  It seems most people skipped that part.

So here’s the problem with the Ds narrative.  On one hand, “we” don’t want it to be all happy all the time.  On the other, “we” don’t want to be aware of the problems specific to our community.

No one story tells everything there is to know about the syndrome or the people living with it. No one study represents all possible outcomes, but research is an important piece of the puzzle.  It’s how we got early education programs.  The news then was grim, but people got together and found a way to change it.  Now, most if not all children with Down syndrome receive early intervention programs and the results are obvious.

If the old study represents outcomes from institutionalization, the new research that allows us to be vigilant caregivers is an important part of increasing not only the life expectancy but also the quality of life for our loved ones.

While I understand and sympathize with those who would rather not know, I believe it’s my calling to bring the information to the community whenever possible.  I can’t do it alone.  I need the help of other concerned parents and the organizations who are trained and equipped to address the issues.

If you care about possible medical issues for adults who have Ds, here are some helpful hints about what to watch for and discuss with your doctor.

If you care about #RaceAndDownsyndrome, please sign the petition.

 

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