Trigger warning: This blog uses the word handicap which may be triggering for some readers.

Having a thirteen-year-old daughter is tricky. She’s constantly pushing for more independence, and her friends are the most important things in her world right now. So, whenever she agrees to spend time with me, I grab it with both hands. Last week, I planned an impromptu trip to Dublin, just for a wander. We were at the Jump Juice counter in the Ilac Centre on Henry Street, and I’d just ordered when, in the corner of my eye, I noticed Alison storming away without me.

“Hey! Where you going?” I grabbed her arm and she swung back around to me.

“That lady called you a smelly handicap.”

“Eh? How do you know that?”

“I heard her. She said ‘oh, I wouldn’t go near that smelly handicap.’ So I thought I’d follow her and punch her lights out.”

A large part of me brimmed with pride. Alison is embarrassed by me, because I am her mum, and cool teenagers are not supposed to admit that they have parents, and certainly not “special” parents. Yet, she was willing to throw herself in front of me to protect me from attack. Little did she know she’d picked up a sword to join so many of us in an ongoing battle to be recognised as equals – God, to merely exist.

I first heard the word “handicap” before I started primary school. Mum spent hours nattering on the phone to her golfing buddies, going on about pars and handicaps. She’d naively hoped that I’d always be oblivious to the negative connotations – the shadow of “cripples” begging during the Middle Ages, “hand in cap”, their survival dependent on the generosity of others. She could have warned me that people would call me names, or that they wouldn’t accept me, but I might not have believed her. I never got any special treatment at home; my favourite expression from my childhood is “No disability will ever excuse you from emptying the dishwasher.” My parents always expected me to do my best at everything I did. But the other side of that was that they taught me that I did not deserve to be treated less favourably. It was not okay to be othered, and to tolerate it was to show people that I deserved this treatment. They encouraged me to speak up for myself.

Granted, having been born a chatterbox, I’m not sure how much encouragement I needed. In first year of secondary school, I was advised that I would not be allowed to partake in PE, or the practical elements of Home Economics. After attempting the basketball drills, I conceded with the PE teachers, Ms Ganly and Ms Healy, that I was probably better off sitting the classes out, but I really wanted to do Home Economics. What I saw was the probability of having to do meal prep in the future; there was little doubt in my mind that I would someday live independently. What my teachers saw, I imagine, was a wobbly girl with shaky hands dancing around boiling pots and sharp knives. In fifth year, I told the teacher, with all the confidence I could muster, that I would be doing Home Economics and partaking in the cooking elements. By this stage, I was already cooking lasagne and pasta dishes at home every week anyway. Impressed (or frightened) by my insistence, she agreed. Soon this smelly handicap was bringing home dinner from school for the family every Thursday evening. The Chinese stir fry was a particular favourite, and now it’s one of Alison’s favourite dinners, too!

But hearing the words “smelly handicap,” thirty-six years after hearing it for the first time, made me feel sad. Like many of my disabled family, I have always fought to dismantle the man-made, societal barriers that block me from accessing my true potential. Yet hearing the word “handicap” the other day brought to mind early Junior Infant days when I, having just learned how to walk, used to meander towards the toilets, and the kids in the older classes would dig each other in the ribs and walk beside me, as if they were trying to trip themselves up. Now, I had no concept of walking any differently, so thankfully the other kids were around to tell me. My friend Peter pointed out to me that, like me, he did not know he had Cerebral Palsy until it was pointed out to him. In fact, he told me, Cerebral Palsy (CP) was initially named “Little’s Disease,” so-called after the doctor who “discovered” it for the first time.  However, Peter pointed out, CP has always existed, alongside many other conditions and impairments, and this fact remains constant throughout the ages. What has evolved (a little) is how we label and consequently perceive and treat disabled people.

For me, hearing the word “handicap” throws me back to a time when I believed there was something wrong with me, and that I had to justify my place in the world. I spent my teen years believing I was not good enough, despite the academic results showing me otherwise. Going to Trinity and seeing how many resources they put in place to enable me to live independently, offered me a valuable perspective I’d never considered before. Learning that I was not a burden lifted a weight of responsibility from me that I hadn’t known that I’d been carrying. 

However, whether we like it or not, our experience of life colours our outlook. And even though, from an outsider’s viewpoint at least, I’ve achieved great things – a university degree, a job, marriage, our child – all of these blessings were underpinned by an inner belief that I didn’t deserve them, that I was just an imposter, waiting to be unmasked.

I’ve written about internalised oppression before, and my stance remains unchanged: I think it is one of the toughest barriers to true equality for disabled people. All our lives, we are constantly told, by a society that purports to know better, what we can and cannot do. We are told that we are a burden. We watch as those who tend to our needs, family members who we crave a relationship with on an equal basis, become burnt out. The dynamic shifts; we cannot possibly ever be equal in that position. People pity family carers, yet the governments still fails to understand that when our human rights are granted, pressure on those who love us also eases.

No parent should ever vocalise a wish to die before their children do. This has been an issue for decades, and the discussion is always the same. In order for the lives of disabled people to improve in a meaningful way, the government must commit to taking a rights-based approach. The government must change how disability is framed in our society. This won’t come naturally to a government that left an eleven year gap between signing up for the United Nations Convention on the Rights of People with Disabilities (UNCRPD) and its ratification. There’s always a great deal of conversation around the provision of disability services, but the government rarely address groups of disabled people themselves (or Disabled Persons Organisations, also known as DPOs) in making these provisions.

And I cannot help but wonder if it’s this lingering culture of seeing us as “other,” as those “smelly handicaps”, that prevents us from being seen as equals. Othering us makes it easier to deny our rights, to keep us separate from the mainstream. If you have not experienced this “othering”, you cannot imagine the effort it takes to try and come across as “normal”. How we sometimes try to hide the “unsavoury” realities of our impairments in the hope it leads to acceptance. How frightening it can be to ask for assistance, personal or technological, for fear that such a request may lead us to be seen as incapable. Kudos where it’s due: many aspects of our towns and cities are becoming more accessible to people with all kinds of impairments. Disability awareness training seems to be more commonplace.

However, until our human rights are truly recognised and met, the legacy of the “smelly handicap” will always be hiding around the corner, ready to take us by surprise.