Parents of disabled children, realise we are our own people


This type of parent is very vocal and unapologetic when it comes to telling the disability community how it should be done (Picture: Samantha Renke)

The moment I declared my choice not to use the term ‘wheelchair-bound’ via social media, a parent I didn’t know pushed back.

This non-disabled caregiver was adamant that their child was ‘bound to their wheelchair’ and felt the need to speak over me – a disabled woman – about it.

We had a heated exchange because the term leaves a bitter taste in my mouth – I’m a wheelchair user, not someone who is chained to their wheelchair and it’s an important distinction to make for me.

It felt like this parent didn’t understand that, couldn’t empathise or – worse – refused to learn.

As a disability influencer, one of the things I have struggled with is non-disabled parents or caregivers of kids who have disabilities or chronic conditions speaking for – and often over – disabled people.

This type of parent is very vocal and unapologetic when it comes to telling the disability community how it should be done – which language they prefer to use or how their experience is the same as ours.

But it’s not, and it’s important for people to recognise that this is identity appropriation, which means you’re claiming someone’s identity for your own.

For many years, I had a codependent relationship with my own mother and she would be the first to admit that it became incredibly toxic for both involved. We merged into one person and felt like a team, but one where none of us actually had autonomy. Everything we did, we had to do together.

She was my main caregiver in every aspect of my life – a parent, physiotherapist, and occupational therapist all in one.

She was also my support worker at university, designated driver, personal assistant and nurse. This role meant that my mum almost vanished as she had no social life outside the realms of me.

For a time, every interaction and conversation revolved around me. Her identity was on pause. Yet I wanted to break free and live more independently.

I realised that, in doing so, I would perhaps render my own mother obsolete if we just became mother and daughter. That didn’t happen – but it took a lot for us to start living out of one another’s shadow.

Thankfully, she never spoke for me unless it was to do with medical decisions because I was a minor.

Until we become disabled or have a child with a disability, most of us go about our day blasély ignorant to the disabling world around us

But the phenomenon is very common and can be anything from parents calling themselves ‘feeding tube mama’ or dedicating whole Instagram pages to their child’s condition or journey.

So the question is: How can non-disabled parents explore the world of disability without appropriating their kid’s disability identity?

There is no doubt that many parents or caregivers will immerse themselves in their disabled child’s world. You couldn’t not.

Until we become disabled or have a child with a disability, most of us go about our day blasély ignorant to the disabling world around us – hospital appointments, wheelchair fittings, hydrotherapy physiotherapy appointments with occupational therapists, operations and medication.

There’s ableism and discrimination everywhere you look, which can be a minefield. Parents may immediately go into fight or flight mode and want to be that strong protective figure in their child’s life.

Disability identity is so rich – it’s a culture, history, sense of self and self-worth. Parents and caregivers absolutely have a place and a role within that identity.

But there also needs to be respect and acknowledgement that disabled people can go our whole lives with having others speak on our behalf or make decisions for us without being consulted. Having our identity is, in many ways, the one way we can maintain autonomy.

Many disabled people are often seen by society as one-dimensional, so it is no wonder that parents of disabled kids also fall victim to this. They’re the ‘parent of that disabled kid’.

Perhaps it’s not by choice that they become so entrenched in their child’s identity, rather they feel othered by proxy.

So how can we all live harmoniously together? For me, it comes down to a few critical factors.

Firstly, don’t assume you know your child’s disability or condition better than they do. It’s disablesplaining to offer suggestions like trying yoga to cure chronic conditions. Don’t project your own uncomfortability of disability onto your child, by way of using language that is more palatable. This includes using words like ‘handicapable’ or ‘differently abled’.

It’s also very important to be mindful of confidentiality – don’t disclose your child’s personal medical records all over the internet, or otherwise. This means not taking photos of your child in hospital without their consent, sharing their personal medical history and trauma or even talking about them over the fence with your neighbour.

To parents of disabled children: Don’t lose your own identity

I understand the reasons behind doing it because you might want to ensure other parents don’t feel alone so you’re sharing tips and tricks, but ask yourself – would you do this if your child wasn’t disabled?

This is your lived experience as a parent, but it should always be shared in a respectful and dignified way. There’s a huge difference between wanting to find solidarity and support and simply objectifying your child because you feel lost.

To parents of disabled children: Don’t lose your own identity.

I say this from personal experience, because I have never felt so much guilt from my codependent relationship with my own mother. She is my best friend and even now at my grand age of 36, whenever I am in hospital or have a broken bone, she’s the one who drops it all and is by my side.

I’m truly blessed but equally, it makes me happiest seeing my mum have her own life outside of mine. My mother’s identity should not be me.

Parents will never know what it’s like to be disabled.

The bottom line is that we are all learning and I believe wholeheartedly that parents and caregivers want what’s best for their children.

At the end of the day, we are humans and we can mess up, but that doesn’t mean once these parents are called out that they should attack or become defensive. Nor should disabled people shut down these parents with hostility because no disabled person has the key to understanding disability identity.

There is no right or wrong way to be disabled – if a parent chooses to use the word ‘wheelchair-bound’ and I find it offensive, this doesn’t mean I’m right, because many disabled people are OK with this terminology. There needs to be a place of balance, rather than conflict.

The damage occurs when we are challenged on our actions but let our egos get in the way. So let’s all leave these egos at the door and come to a place of balance and respect.

The mantra ‘nothing about us without us’ springs to mind. These powerful and empowering words once fuelled the disability rights movement.

They stress the importance of autonomy for disabled people that can only be achieved if we are at the heart of conversations.

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