People with Down syndrome love their lives.

My daughter's reaction to seeing herself on the TV monitor

My daughter’s reaction to seeing herself on the TV monitor

This is the third in a series of posts about how parents feel about their child with Down syndrome, how siblings feel about their brother or sister, and now, how the individuals with Down syndrome feel about themselves. 

This is the third in the series of surveys conducted by Drs. Skotko and Goldstein and Susan Levine. This final survey was of almost 300 individuals with Down syndrome and wanted to find out about their self-perception, their relationship with others, and what they would like parents and physicians to know.

So much of what is written and talked about individuals with Down syndrome is by people who do not have Down syndrome. These survey results are remarkable for that fact alone–that they are from individuals living with Down syndrome–but the results are also remarkable:

  • Nearly 99% of individuals with Down syndrome said they were happy with their lives;
  • 97% said they were happy with who they are; and,
  • 96% said they were happy with how they looked.

I invite readers to send me surveys of the general population that report that high of a response rate to those questions. These results are consistent with what has long been reported from studies of individuals labeled as disabled: they have a much more positive view of their own lives than the one society ascribes to them.

The survey also reported how individuals with Down syndrome feel about others:

  • 99% said they love their families;
  • 97% said they like their brothers and sisters;
  • 86% said it was easy to make friends with others.

Again, please send in surveys of the general population that report percentages this high if you can find them.

Perhaps, most importantly for the purposes of this blog is what individuals with Down syndrome would like parents and physicians to know. Here are some of the quotes from the responses to the open-ended question of what they would like new parents to know:

The baby will bring you happiness.

Love them, and they will love you lots.

Don’t be sad. We can all learn.

For physicians, the survey respondents wanted them to know:

I am not any different from other people.

Look at me. I can do all sorts of things you didn’t think I could.

Don’t label us. People with Down syndrome do a lot of things.

Indeed they do.

Over at her blog, Amy Julia Becker ran a month-long series discussing the issues surrounding the possible “cure” for Down syndrome. She graciously included a post from me in her series. She also included a couple of posts from individuals with Down syndrome, as well.

I wanted to give the last word on National Down Syndrome Awareness Month to a person with Down syndrome. Here’s a quote from the post by Tryn Miller as part of Becker’s series that seems fitting to conclude this month with:

I may be different, but everyone is different in their own unique way. If I didn’t have this extra chromosome, I wouldn’t be me! I am thankful to have Down syndrome because I just want to make a difference in this world, I feel like I am!

Comments

  1. Karen Prewitt says:

    Great series Mark. Thanks for being such an advocate, and inspiration. Love that last quote!

  2. I just shared this with a mom overseas. She wanted assurance that if she released her baby to a family in the US that her baby would be happy here. This is a great article for her to read.

  3. Hi Mark,

    Thanks so much for this site and all the resources on it.

    I have just linked to it in a blog post on bioethics, mentioning prenatal screening for Down Syndrome. I just spotted, though, that the link to the survey of people with DS doesn’t work anymore – the one to Dr Skotko’s site. I wonder if you have another link for those interested in the survey?

    Thanks again for all your work.

    • Thank you for bringing the non-operative link to my attention. I have updated the link with one that should work. Thanks also for the link to the blog. Regarding your discussion on termination rates, you’ll find other posts (like this one, and this one) that address that issue (though I would not recommend reading those as a means to alleviate depression).

      • Ha! Yes, quite.

        Thanks for the updated link – I’ve amended it in my post, too. I noticed because people were clicking the old one, so it will be helpful to have the new one.

        Thanks for the extra links, too. Keep up the good work!

Trackbacks

  1. […] studies have found that 99 percent of individuals with Down syndrome say they are happy with their lives; that their parents love them; and, that their siblings consider […]

  2. […] of their children’s lives, a peer-reviewed survey of adults with Down syndrome found that nearly 99% were happy with their lives. You would not find that level of satisfaction among those of us without an extra 21st Chromosome. […]

  3. […] with their lives and the people that know them are glad that they do. Mark Leach has a wonderful post about this topic. Down syndrome does not inherently causes suffering. This is simply a […]

  4. […] something else to consider, surveys show that most people with Down syndrome tend to not only be happier than the general public but also […]

  5. […] studies have found that 99 percent of individuals with Down syndrome say they are happy with their lives; that their parents love them; and, that their siblings consider […]

  6. […] something else to consider. Studies show that most people with Down syndrome are happier than the general public and are also happier with themselves and who they are. It’s only […]

  7. […] something else to consider. Studies show that most people with Down syndrome are happier than the general public and are also happier with themselves and who they are. It’s only […]

  8. […] something else to consider. Studies show that most people with Down syndrome are happier than the general public and are also happier with themselves and who they are. It’s only […]

  9. […] something else to consider. Studies show that most people with Down syndrome are happier than the general public and are also happier with themselves and who they are. It’s only […]

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