Why Ezra Frech from DWTS and Jay Shetty made me bawl my eyes out today

 

I was moved to tears this morning on my way into the office. I had switched on the latest episode of Jay Shetty, a regular rotation in my list of podcasts for the daily commute, and the guest was Ezra Frech, who you may know from Dancing with the Stars. The episode title “I Was Put on Earth to Change the Way We See Disability.”

Ezra was born with 1 finger on his left hand and a left leg that skewed upwards to his stomach that early in life had to be surgically removed. He now has a prosthetic leg and his big toe was kept and attached to his left hand, so that he would have dextrous ability. This surgery is something that gave Ezra the best chance of survival and greater mobility in life and he talks fondly and with admiration about the surgeon who performed this limb transplant.

He spoke so eloquently on the subject of growing up, looking different, going through surgery to enable more mobility in his hand, difficulty navigating his teenage years with girls, but he never saw his disability as a barrier to getting on with life, engaging in sports. 

He’s a Paralympian and now on Dancing with the Stars, but his life could have looked very different if he’d made different choices on how felt towards his disability. Had his parents been different people, and not encouraged him in the way they did.

In the podcast, Ezra references a saying that is largely noted by disability advocacy groups, ‘disability is the largest minority, that anyone can become a part of at any time.’

According to the World Health Organization, 16% of the world’s population – or 1.3 billion people - will experience significant disability in their lifetime. Disability is the largest minority group in the world and yet it is sadly still feared, misunderstood and seen as taboo, or undesirable by so much of society.

When my husband and I decided to have kids, 9 or so years ago, we did not think about the possibility that the children we brought into the world, would be any different or have any kind of health issues.

Disability wasn’t even really on our radar, aside from the fact that when I was in my early 20’s I was diagnosed with ADHD. I didn’t consider this a disability though, more just an inconvenience, and a nuisance to my mum who was forever reminding me to do my washing, pick up the clothes of the floor, do my homework etc. I learned over the years to roll with the punches, implement systems to cope with work and study, and that was the extent of it really. If I was making impulsive decisions it was more of a personality trait to me, than a disability.

So, when we had Tobi, we weren’t expecting to one day hear that he had a language delay or to be advised that we should get him tested for autism. I didn’t have any understanding of autism except for a vague idea that these super gifted but socially awkward humans existed, and they were weirdly good at counting. That was literally my only concept of autism.

As time has gone on, we’ve been on a huge learning journey, as I’ve documented in my book “Understand Me: Autism in Early Childhood and the Fight for Inclusion”. We’ve had to face challenges specific to the boy’s disability, accept certain aspects of our lives have had to be altered, and our expectations of what their lives will look like, have had to be adjusted.

There was a big reason for my emotions while listening to Ezra speak about his journey to the Paralympics, and his parent’s support, how he has taken to being on dancing with the stars and how he accepts every opportunity and gives it his all. My big emotions stemmed from the fact that we haven’t yet been able to engage Tobi or Finny in any kind of athletic or sporting group activity.

I tried once. I took Tobi to a trial for a martial arts class. They started the activities, and Tobi did not want to participate and get involved as the rest of the group was. There was lining up involved, there was turn taking, and there were rotating activities in different sections. Tobi just wanted to explore the room, duck under the boxing ring ropes and do anything but listen to the instructor. He was 7 at the time.

The instructor took us aside to a room after and did a one-on-one session with Tobi. He offered him private lessons instead, which sadly were too expensive, or to join in the ‘special kids’ class – which I just find so patronising. While we were in the trial, Tobi was talking and engaging with other kids who seemed to be neurotypical. He actually loves people and gets on with almost anyone. I don’t want to just corner him off to a private session, or a ‘special’ group. I want him to be amongst people of all kinds.

I think this is where the emotion comes from deep down. Thinking that this may never be a possibility for Tobi. I am trying to change that narrative within myself though. I want to believe that anything is a possibility for both our boys. Dan and I will continue to try and encourage, support and introduce Tobi and Finny to opportunities for social, activities and inclusion in any way that we can.

There are two types of disability Olympics. The Paralympics – which is for people with disabilities competing against other people with similar disabilities (amputees, wheelchair users etc). Then there are the “Special Olympics” – predominantly for people with cognitive impairments and neurological conditions.

Why do I hate this word “special” so much? A couple of years ago, the boys were invited to their first Christmas party for people with disabilities. It was then called the “Special Kids Christmas Party”. They wrote to us afterwards with a survey for feedback. I replied with “I think you need to change the name of this party. “Special” has negative connotations and it doesn’t make me feel good about bringing my boys along. As much as  I appreciate what they were doing and so generously giving kids with disabilities an experience that they might not necessarily get elsewhere.

I asked Microsoft Copilot, why I have a visceral reaction to the word “Special” when it comes to disability.

Here’s what Copilot offered as few reasons:

“Based on the inclusion work you've done with Helping Solutions, True Ability, your advocacy around autism, and your own experiences as a parent, I suspect the word may feel uncomfortable because it can sound like:

• talking around disability rather than about disability
• pity-based rather than rights-based
• segregating rather than inclusive
• patronising rather than respectful

That's a philosophical position shared by many contemporary disability advocates, particularly within disability rights and neurodiversity movements.”

Many people within the disability community dislike terms such as 'special needs' because they can feel patronising and othering.

Disability advocates increasingly favour direct, respectful language that recognises disability as part of human diversity rather than something that needs to be softened or hidden. [https://pmc.ncbi.nlm.nih.gov/articles/PMC7326393/]

Maybe I should forward my feedback to the Christmas Party organisers, to the organisers of the Special Olympics. I’d love to think that we could change language more broadly over time and find ways to be more inclusive. I say this a lot, that people with disabilities don’t want to just participate in activities with other people with disabilities.

A person with a cognitive disability should be accepted in sports and group activities with non-disabled people, and people with physical disabilities should not be ashamed of their appearance or feel they need to hide it in certain public settings.

It really is a fight for inclusion, as I’ve worded in the title of my book Understand Me: Autism in Early Childhood and the Fight for Inclusion. If it’s a fight they want, it’s a fight I’ll gladly give them, but I’d prefer to just collaborate right?