Parenting a child with disabilities in an ableist society

I am the parent of a two year old boy that has disabilities and I’ve lost count of the number of people who have said to me that things must be “so hard.”

That our life must be “so hard”.

Some of these comments come from strangers, sometimes they come from professionals or friends.

Regrettably they even come from my own mouth but not because I feel like our life is hard because of Joseph.

Unfortunately we are part of a system.

A system that nobody would choose to be in because it is a system that is far from ideal.

It is a system that ensures parents like me regularly have to almost prove to complete strangers (sometimes people with very little knowledge of children with needs like ours) that our lives are difficult just to be able to access necessary care/equipment/resources to meet our children’s basic needs.

We have to answer invasive, probing questions and justify everything.

Whilst I’d like to acknowledge that many people who make these comments do not have ill intentions and I can appreciate that sometimes people are trying to express understanding or empathy at our situation within such a system.

I’d also like to address the issue when these type of phrases are used in relation to the child’s disabilities or medical complexities.

I certainly can’t speak on behalf of every parent out there.

But I do want to talk about the true difficulties of parenting a child with disabilities from my own experiences.

Dealing with negative attitudes, ignorance and preconceived assumptions is what makes our lives harder.

It is other people and systems that make our lives harder.

It’s the education system that undervalues pupils with disabilities that makes their nursery/school experience harder.

It’s the medical system that often refuses to cover care and resources that children need to be comfortable and to thrive.

It’s having to jump through hoops, making endless phone calls and filling in ridiculously designed application forms and paper work to access the most basic but essential things.

It’s relying on charities to pick up the slack where these systems are failing.

It’s the negative attitudes towards disabilities, especially the prevailing attitude of pity that is often disguised as “niceness” — yet blatant ableism — that suggests our lives are “so hard,” but not representative of the reality of my child’s diagnoses.

If you ask any parent to use words that describe parenting, most of them will inevitably use words such as hard, exhausting, complicated, lonely, expensive.

Because parenting, in general, can be all of those things.

Parenting is hard.

Many of us will agree that this parenting lark is one of the hardest thing we have ever had to do.

Yes, parenting my child in an ableist world makes it much harder than it needs to be.

But not because of my son.

Not because of who he is. Not because of his diagnoses.

It’s hard because this ableist world fails to consider the lived experiences of disabled individuals, failing to see them as fully human, or as deserving of dignity and respect.

But these attitudes are not acceptable.

That is a fight I will keep fighting for my son until I take my last breath.

I am very passionate about raising awareness of families like ours and always do my best to politely educate others.

I am aware that not all ignorance comes with malice. It is merely a by-product of the society we live in.

Until I had Joseph I was ignorant too.

The fact that I was makes me even more determined to help others understand and to change attitudes towards people with disabilities.

I would like to tell those people what parenting a child with disabilities is really like;

It’s like having a toddler, because he is a toddler.

It’s summer in the park on a huge picnic blanket.

It’s lazing around in front of the telly on rainy afternoons.

It’s celebrating birthdays.

It’s having inside jokes.

It’s negotiating with a toddler who has his own mind and interests even though he is none verbal.

It’s Sunday morning cuddles squishing into one bed.

It’s lots of hugging.

It’s trips to the safari park and sea life centres.

It’s lots of words of affirmation.

It’s tantrums.

It’s feeling like we need a break.

It’s expensive.

It’s putting his needs above our own.

It’s doing anything to make him happy.

It’s praying for 5 minutes more sleep.

It’s working so hard to help him achieve and learn new things and celebrating like lunatics when he does.

It’s messy, it’s exhausting, it’s beautiful, it’s parenting.

It’s caring about social justice issues that affect my son and other children we know, and I will challenge anyone who believes my child or children like him shouldn’t have the same rights or opportunities as other children their age.

Its all of these things and so much more.

It’s life!

Because here’s the thing: disability is a part of humanity. It always has been. It always will be.

And we will continue to have brothers and sisters, and sons and daughters who are disabled.

It is about time that society caught up and learned that it is not a lesser way of living, or rather it doesn’t and shouldn’t ever have to be.

Parenting my child with his abilities is not “so hard.”

Being a parent of a child with disabilities in a disabling world..now that is hard.