1. Karen Gaffney

Karen Gaffney, who has Down syndrome, is an advocate for those with disabilities as well as a renowned long-distance swimmer.
(Photo from NCR)

Karen Gaffney has achieved a huge number of firsts through her passion for swimming and her advocacy for people with Down Syndrome. Besides earning two gold medals at the Special Olympics, she has completed many long-distance open-water swims. Her journey towards crossing Lake Tahoe (an ice-cold challenge only attempted by an elite group of ultra-swimmers) was the subject of a documentary. She also crossed Boston Harbour and San Fransisco Bay and was the first ever person with Down Syndrome to swim the English Channel.

I really want people to understand that we’re more alike than we are different. I just want them to know about the tremendous capabilities of people with Down syndrome and I want to show them what is possible for people like me.

Karen Gaffney

She has also been a passionate advocate for the inclusion of people with Down Syndrome, establishing a non-profit – the Karen Gaffney Foundation – for this purpose. In 2013, she became the first living person with Down Syndrome to receive an honorary doctorate, from the University of Portland, for her work in raising awareness about the abilities of people with Down Syndrome. Check out her TEDx talk below!

You can follow her on Twitter here.

2. Heidi Crowter

At just 23 years old, Heidi Crowter is already a seasoned disability rights advocate. She has spoken outside the UK parliament and at the World Down’s Syndrome Congress, the Church of England Synod, and Speakers House on subjects such as her path to independent living and training midwives about Down Syndrome. She is an advocate for Don’t Screen Us Out, which has lobbied for better consideration of the ethical implications of NIPT (prenatal testing for Down Syndrome) being rolled out across the UK health system and accurate, up to date information about Down Syndrome to be provided when receiving a diagnosis.

She has recently launched a landmark legal case challenging the UK abortion law on the grounds of disability discrimination. While there is a 24-week time limit after which abortions cannot be performed, there is an exception for babies diagnosed with a disability – which includes Down Syndrome. If there is a prenatal diagnosis of Down Syndrome, an abortion is legal right up to birth.

At the moment in the UK, babies can be aborted right up to birth if they are considered to be “seriously handicapped”. They include me in that definition of being seriously handicapped – just because I have an extra chromosome! Can you believe that?

What it says to me is that my life just isn’t as valuable as others, and I don’t think that’s right. I think it’s downright discrimination! 

Heidi Crowter

There is an ongoing crowdfunding campaign to cover the costs of the legal action, which you can donate to here. Heidi is also on Twitter and Facebook.

3. Frank Stephens

Frank Stephens, an American actor, has appeared in many plays and made several guest appearances on the Emmy- winning reality show Born This Way. He is a spokesman for the Global Down Syndrome Foundation. Frank has spoken all over North America and Europe promoting the inclusion of people with intellectual disabilities. President Obama described him as a man who “writes eloquently about the pain and exclusion when others don’t accept you or treat you with the respect every human being deserves.” 

Whatever else you learn today, remember I am a man with Down syndrome and my life is worth living.

Frank Stephens