Ellie Simmonds is a small woman. She is a Dwarf. I am an even smaller woman with Osteogenesis Imperfecta (Brittle Bones). On April 5th 2022 I watched Ellie do something quite revolutionary. Appearing in a mainstream television programme (The End of Dwarfism? BBC One) in front of thousands of people, she wept as she recounted the pain of rejection she felt when non-disabled people were discussing the ‘treatment’ of people like her. In this instance their comments were about a new drug, vasoritide, which they were happily claiming could ameliorate the ‘symptoms’ of dwarfism, and make people with her condition more ‘normal’. https://youtu.be/V4RwgRULi4A
Ellie is not Alone
I knew just how she felt. Many disabled people, especially those of us with genetic conditions feel these conditions are an essential part of who we are. Unlike Ellie however you would never catch me crying about it in public. it has never felt safe enough. Few disabled people will show how hurt we are by the discrimination we face – anger yes, but hurt never – so the non-disabled world carries on oppressing, unaware of the damage they do to our sense of worth and acceptance. This is why Ellie’s courage to show her pain is a revolutionary act. No more pretence, no more bravado! She showed what rejection feels like and as such forced the viewers to see she is just another sensitive human, just like them.
Ellie interviewed many parents as they discussed their decision to put their young children on this new and powerful drug. Some concerns were clearly health related, but the over-riding fear which was driving many of them was the fear that a small adult would never find love. It brought back to me the shocking memory of my mother telling me at the age of ten that “No one will ever love you except your own family”. Sadly she believed it because of her experience of living in a world which discriminates against anyone who is different, disabled, or even just ‘plain’ – “Life is so much easier for women if they are pretty” she told me.
Well, you could say Ellie is beautiful, healthy and a gold-medal winner in the paralympic swimming events. It is OK for her to be like she is, but not everyone is so lucky – but this misses the point completely. To simply be a mediocre human is enough. We have the right to be ourselves. We have been fighting for this right for a long, long time, and it has not yet been won.
The ‘Dont Screen Us Out’ Campaign
Heidi Crowter is a woman with Down’s Syndrome. She has taken a case to the High Court against discriminatory abortion laws. These legalise the temination of people with non-life threatening genetic conditions like hers (ours) up until the day they are born. “These laws make me feel unloved and unwanted” she says, “But I can see no difference between me and someone who does not have Down’s Syndrome”. https://youtu.be/eeNuWj3xhbM
So when parents of disabled children, or disabled people ourselves are struggling to decide whether to take a new drug or have some medical treatment, the question should be ‘Is this about health, mobility or pain relief?’ in which case it needs considering, or is it about becoming more ‘lovable’ in which case it should be chucked in the dustbin of outdated prejudice and cruelty.
Thank you Ellie and Heidi and all the others disabled resistors past and present for trying to make our world a safer place for everyone.
I too saw Ellie’s programme which was so well done. And I also applaud Heidi’s campaign “Don’t Screen Us Out .” As a parent of a very amazing woman who has Down’s syndrome, who I absolutely believe is very loved, and brings so much to her world and to all who know her.I cannot imagine a world without her, or all our disabled friends whom we are privileged to know. I so agree if with Micheline, if medical interventions help health or pain control, yes they should be considered, but to wipe out difference is an abhorrent idea. Please let us all learn to accept our differences and work against prejudice and discrimination.
So we’ll put, as always ,Micheline. Ellie’s and your stories are immensely important in advancing inclusion and advancing social thinking.
We need to be more welcoming to disabled children right from the start and value all disabled people ,we make the world a better place and more inclusive
Under the un convention value our children right to life ,right from the start .
Change attitude towards us disabled mothers