I'm Just Heidi
By Heidi Anne Crowter
I am 28, I’m a disability rights activist. I’m outgoing and very loud! I’m a good friend, family member, and wife. I love singing and dancing. I never stop talking! I have a gerbil called Compo. I am a Mencap Mythbuster. I’m a Liverpool fan. I love Disney films. I have a Guinness World Record for remembering birthdays. And I happen to have Down's Syndrome - I don't let it stop me living a great life.
I’m a human being, not just a list of health problems, yes, I have Coeliac but that doesn’t define me, I am defined by who I am
I have always had a passion for activism, I started back in 2016.
I started campaigning with Don't screen us out which is a campaign led by my great friend Lynn Murray who has a daughter with Down’s Syndrome.
Don't screen us out campaigns for up-to-date information about Down's Syndrome because some people were hearing negative views about Down’s Syndrome during pregnancy and after the birth of their child.
We want people to see that being diagnosed with Down’s Syndrome isn’t scary, and that healthcare for people with DS has moved along.
We want people to know that you can live a happy and fulfilling life with an extra chromosome.
There is lots of support out there for young mums who find it hard to deal with the diagnosis.
When I first started campaigning I started training midwives and nurses to break the news sensitively.
It is really important to me that new parents get balanced information if they find out their baby has Down's Syndrome.
In February 2020 I found out that the law states that a baby with Down’s Syndrome can be aborted up to birth, but a baby without Down’s Syndrome can be aborted up to 24 weeks. This is downright discrimination in my eyes.
This law makes me feel unwanted and unloved and that I shouldn’t be alive.
I know I am wanted but that’s how it makes me feel.
I was shocked to my very core when I found out about this discriminatory law, because I have always been treated the same as my other siblings. I was crying my eyes out, but something pricked my mind.
I wanted to fight this injustice to show that people with Down’s Syndrome are amazing Just the way we are.
One of my favourite songs is Just the way you are by Bruno Mars because I can use it in my campaigning, and it brings out what I am trying to say - that we are amazing as we are.
I decided to take the UK government to court over the 1967 abortion act.
Which was when people with Down’s Syndrome were put into instructions because we weren’t allowed to go to school because of having an extra chromosome.
I wanted to change the law and change people’s opinions about Down’s Syndrome.
When I first started the court case, not many people knew that abortion up to birth was allowed for Down’s Syndrome.
I wanted to change the law for equality, because I think the law is discriminatory.
Unfortunately, the High Court ruled that the Abortion Act did not interfere with the rights of disabled people but I think it jolly well does!
I did not want to stop fighting, so I applied to take the case to the European Court of Human Rights. Sadly they rejected the case too.
My fight was not in vain, I have a friend and MP called Sir Liam Fox who has tabled an amendment for equality in the womb inspired by my court case which sadly has been abandoned because of the general election.
I hope that this fight can continue.
I am passionate about improving health care for people with a learning disability.
You may be aware that sadly a young man called Oliver McGowan died when he was only 18, he had a learning disability and autism.
He died an avoidable death because the doctors and nurses didn’t listen and understand his health needs or his disability.
His mum Paula McGowan wanted to change this so she started up by law that all the NHS and social care staff need to do this course.
I am a trainer on the Oliver McGowan training, I enjoy doing this as it makes a difference and teaches doctors and other staff all about people with a learning disability and autistic people. We have had lots of positive feedback.
What I want to get out of the Oliver McGowan training is to change the NHS’s attitude to people with Down’s Syndrome and other disabilities.
I have a passion that people with Down’s Syndrome and other disabilities can get excellent health care like I have had. Sometimes I have had a few bumps in the road but mostly positive.
I want you to know about my experience, and what good healthcare should be like for people with a learning disability.
Most of my life I have had fantastic health care. What does a good doctor or health professional look like for me? It is a doctor who always speaks to me, not just my parents or support staff who comes with me.
They treat me like an adult.
It’s important that they speak to me directly, because who knows me better than me when it comes to my healthcare?
They listen to me and hear my experience. They tell me what they’re going to do before they do it which helps me feel prepared and calm.
Good doctors support me with reasonable adjustments, for example letting my support staff come to the appointment to help me focus and listen. They explain hard words when I don’t understand them.
I have had a few bumps in the road, on some occasions doctors haven’t listened to me. For example, when I went to the doctors to get an ADHD assessment they said ‘it’s just Down’s Syndrome’.
This is called diagnostic overshadowing which means blaming it on Down’s Syndrome and not finding out the root cause of the problem.
Another example was when I had to be tested for sleep apnoea, they didn’t think I needed the test, as they didn’t know that sleep apnoea is common in people with Down’s Syndrome. After pushing for a test, I was diagnosed with mild sleep apnoea and now use a CPAP machine. This important health condition could have been missed if we didn’t ask again for a test. I felt not listened to.
The consequences of diagnostic overshadowing are missed health conditions, missed treatments, and sometimes even death. I want you to do your research and find the root cause of the condition, not just blame it on our disability.
A positive example is that I was diagnosed with Coeliac when I was 11. My doctor knew that it was more common in people with Down’s Syndrome.
I have had fantastic experiences at my Coeliac appointments.
As I have had a great experience, I want other people to have a great experience as well.
Me and James have been working on getting a Down’s Syndrome act through parliament to make sure that people with Down’s Syndrome have a better experience in health- care, employment, education, social care and housing.
When the Down’s Syndrome Act became law, I felt really proud that other people with Down’s Syndrome would have better experiences in the future.
I want Doctors and midwives to know that Down’s Syndrome is not scary and that people with Down’s Syndrome are amazing just the way we are.
Thank you for listening.
For more information about Heidi's campaigns
