‘Yes, my family is disabled. But mostly by society.’

This post was first published on Mamamia.

My husband and I have two kids, with many labels between us; autism, ADHD, anxiety, depression. Our diagnoses aren’t the problem.

December 3 is the UN’s International Day of People with Disability. One in five Australians have a disability. Research and experience tell us most of us will be disabled at some point. If you aren’t now, you likely will be one day. But despite its normality, society still sucks at inclusion. We see disability as anomalous, tragic, or other.

Our problem is self-perpetuating. Public spaces feel or are inaccessible to disabled people. We aren’t authentically represented in media. We don’t see disability – despite its prevalence – and that reinforces our collective incompetence at inclusion.

Our attitudes are products of the medical model, which insists that someone’s medical condition or impairment causes disability. It views difference as a problem to fix. At its worst, it promotes ableism, the insidious belief that says disability lessens a person’s value.

Ableism is often subtle, unintended; it’s why well-meaning people say awful things like “I’m sorry” when they hear my family are autistic. It’s why expectant parents say “I don’t care about sex, as long as it’s healthy.” The implication being unhealthy babies are defective, unwanted.

It’s pervasive too; embedded in our institutions, laws and spaces. Schools and health services aren’t funded to support our kids, and disability access is tacked on at the end, rather than throughout design.

And I bet you’re ableist. I am too. We’re raised ableist. We teach our kids to hide their authentic selves. We insist on conformity – look us in the eye, stop flapping, don’t sound like that; don’t play that way, look normal, be normal. It might be well meant, but it’s akin to closeting and erasure.

Because ableism says difference = deficient = disabled = less. Less capable, less functional, less beautiful, less right, less human.

My family’s disabilities, unlike some, are hidden. We can decide if or when to disclose them. If we do, we risk scepticism and discrimination. If we don’t, we need to surpress our traits and internalise our needs. My son attends an autism-specific school. Still, people dispute – to my face! – that he is autistic, because he’s so verbal/makes eye contact/isn’t-like-the-other-autistic-kid-I-know. I hide my ADHD professionally for fear of discrimination, my husband his autism when he lacks energy to address misconceptions. It’s exhausting to hide or justify our needs. We shouldn’t have to.

And that is the crux of the better ‘social model’ advocated by disabled communities worldwide. We are disabled not because of our diagnoses, but in interaction with barriers that inhibit our wellbeing and equal participation in society. Barriers come in many forms: bright, flashing lights, the lack of braille or ramps, and people’s social expectations and prejudice.

I am so grateful to the people who paved the way for this shift in thinking, when Australia was a far worse place to be different. I am acutely aware I live in a time and country of privilege. It may sound entitled to complain when other places are far behind, but this country still has a long way to go. The Disability Royal Commission has proven that.

With the right supports and adjustments my family can do almost anything yours can. We can go out, conquer change, work, learn, play, socialise in our own way. We can and will do big, beautiful Christmases with safe food, support workers and breaks. Energy willing, I’ll fight anyone who says ours is or must be a lesser life.

So please, this IDPWD, let’s do better. Disability isn’t a limitation on our humanity and personhood; it’s an expression of it. Change spaces to include us. Ask what we need – don’t make assumptions about incapacity or impairment. Look us in the eye when you say disabled or diagnoses, without pity or lowered voice. Practice if necessary – they are not dirty words. I want my kids to know there is no shame in being disabled. I need to know it too.

As my son says, everyone is different.