People with Down syndrome love their lives.

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!