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I never knew how unfair the world was until I had a disabled child

I never knew how unfair the world was until I had a disabled child

I am not that naive. I have always understood privilege and that not everyone has equal chances in life. But with words such as inclusion, discrimination, and tolerance now in daily use I had thought the world was changing in a positive direction. That was until I had a disabled child. 

The world isn’t fair, and many are still facing inequality almost everywhere they go. The harsh reality is that often those most excluded and discriminated against have little means of effecting change. So, on behalf of my own son, and the millions of other disabled children; young people, and adults I hope this makes those who can affect change to think more and do more. 

Outdoor amenities

One of the first ever things I noticed when my son was small was that outside play opportunities were unfair. Climbing frames, he couldn’t do; swings he didn’t have the body control to safely sit on and even slides too narrow for me to sit him on my knee. At just 9 my own daughter was so disgusted by this fact she wrote to the ‘park builders’ asking why they had forgotten her brother. It begs the question that in 2022, why are we still forgetting about the disabled when investing in play equipment in public that should be accessible for all? It’s not fair.

Lack of accessibility

Then there’s the lack of accessibility. Why are there still buildings in the 21st century without ramp access? Surely ramps benefit everyone and allow equal opportunities for all? Yet stairs are still the norm and lifts still an afterthought. Even in buildings where these are thankfully standard there’s often narrow aisles or blockages preventing people and making steering a wheelchair tricky. It’s not even just those using wheelchairs who have these difficulties too as prams, buggies, even mobility scooters all require ramps, wider access, and adequate working lifts too. Fair access needs to be so much better. 


Now let’s move on to education. The lack of choice in special education and the hoops that are required to jump through to get a place make education for a child like mine very unfair. Often choices aren’t just limited they are non-existent! Opportunities are often limited and travel a necessity. When inclusion in mainstream is an option, the huge lack of funding often makes it impossible and impractical. With schools still viewing children with additional needs as a burden on scarce resources instead of valuable contributors to the school community. They don’t have a fair chance. 

Toilet facilities

Now onto a taboo that few feel able to talk about: personal care needs and toileting. I took my son to a shopping mall recently. While there he required access to the bathrooms. When I found them, I was horrified to find the ladies and gents unlocked with free access, but all the wider disabled cubicles locked! I own a key that should be standard for all such places. But like so many buildings this mall has used different locks meaning I had to find a member of staff on a busy day then walk back to the bathrooms just to access a basic amenity. Something that everyone else takes for granted. How is that fair? Even when we did get access the room was barely suitable for my son’s needs and had clearly been constructed for elderly or less able bodied than physically disabled. I managed because that is what I’ve been used to doing for 13 years now. But it’s not good enough. I shouldn’t have to face this still. It’s not fair to me or my son. 

Life isn’t fair for my son; not fair he can’t speak or read or write. Not fair he has a progressive genetic condition; it’s not fair he’s had to have 16 general anaesthetics in the last few years alone.  Not fair he has so many medical appointments and requires 24-hour care 7 days a week. But his life could be fairer if those with the ability and understanding took more time to do things to make aspects of his life easier and fairer.  Like having toilets that meet the needs of real disabled people, better access to places and an attitude that says people like my son matter. 

Because disabled people do matter, and they deserve to be treated fairly. 

Firefly Blog

Real life stories, issues and experiences of day to day life by special needs parents and
healthcare professionals.

Miriam Gwynne

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Full time mum and carer for two truly wonderful autistic twins. I love reading, writing, walking, swimming and encouraging others. Don’t struggle alone and always remember someone cares.

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