I seem to be having déjà vu (Picture: Samantha Renke)
As we come towards the end of the year, I start to feel more frazzled than a jacket potato that’s been left in the oven too long.
We can all relate to burnout – heck I’ve even written how to combat it – and in winter, the shorter days, the bitter air, and the coughs and colds spreading like wildfire don’t help.
But I find it particularly bad.
I have a heavy workload, as disability ‘awareness’ comes alive from the end of September until Christmas – there is Inclusion Week (26 September to 2 October), Disability History Month (16 November to 16 December) and of course, International Day of Persons with Disabilities on 3 December.
As a disability consultant and campaigner, it is the most lucrative and productive time of year for me.
I am incredibly lucky to be inundated with offers to deliver disability inclusion and equality training, conference appearances and keynote speeches – all with the aim of creating positive cultural shifts that will hopefully see disability on the agenda front and centre.
It’s meant to be exciting, inspiring a time of celebrating diversity and the chance for disabled people to simply rejoice in being unapologetically themselves.
But I have to admit, exposing myself and sharing intimate information to strangers about my day-to-day life as a disabled woman – including the highs and the lows of how I face discrimination, the microaggressions and my internalised ableism – often feels like you’ve bared your soul in such a vulnerable way.
Still, as a physically disabled woman, I look forward to having a place and voice at the table – a time to amplify the voices of deaf, disabled and neurodivergent people.
I feel a lot of the time I am flogging a dead horse, all talk and very little action
I’ve said on a number of occasions these past few weeks, ‘I bloody love my job!’ and for the most part, I do. I love opening people’s eyes to a disabling world and sharing my lived experience.
I am a performer at heart, and I have left my previous acting career behind me for a new stage, and a new audience – a corporate one.
That involves working with broadcasters, marketing companies, even law firms. All of whom have disability issues on their minds, finally!
Yet, amongst the high energy, I have also experienced a new kind of burnout.
Not physical exhaustion, but emotional. Constantly sharing my story, being vulnerable and almost pleading to the world that I’m worth investing in has started to take its toll.
I am left somewhat drained, not to mention saddened by the fact that I seem to be having déjà vu.
Many of the conversations I’ve been having through Disability History Month are the same from the previous year and the one before that.
In fact, I feel a lot of the time I am flogging a dead horse; all talk and very little action.
For example, I’m regularly asked about the ‘correct’ words to use, as though disabled people have a universal language. The fact is, it is subjective and the only way we are going to ensure that everyone feels included is to ask each individual what they feel comfortable with.
If a disabled person doesn’t instantly gush over your attempts at allyship and inclusion, don’t be offended (Picture: Samantha Renke)
Similarly, I’m sick of feeling like I’m having to justify my right to work, to live a life free of discrimination.
Unemployment amongst disabled people is still incredibly high, and infrastructure is still incredibly ableist.
On my way to one of my talks, the taxi driver asked if I wanted the ramp, as if he assumed I could secretly fly.
It pains me to say it, but even the celebrations of International Day of Persons with Disabilities fell short in my opinion. I did not see many non-disabled people posting about disability on social media, with most reflections coming from disabled people ourselves.
Of course, I cannot force anyone to be a cheerleader or ally and I appreciate we all have our own priorities in life but it’s sad to see very little progression in terms of non-disabled people really calling out ableism without being prompted.
It may seem every other day is an advocacy day, but with one in five working age adults being disabled, it is surely a worthwhile cause.
It’s a tricky tightrope for people like me to tread. Mostly, because there are many good allies – including companies who practise what they preach and do not approach disability as a box ticking exercise. They are committed to policy change and truly see the value in the strength of disabled people and what they have to offer this world.
Earlier this month, Apple released a phenomenal campaign showing people with disabilities using accessible technology, which totally blew my socks off and met so many of my expectations on where we should be right now.
I didn’t think that I would see such a diverse casting of disabled individuals, who I felt truly represented the multifaceted face of the disability community. It also showed how technology is such a powerful tool and worth investing in.
I still find myself tiptoeing around disability agendas by being overly complimentary towards those organisations who have helped our community even when, deep down, I want to scream ‘you are still failing us, we need so much more.’
I’m guilty of pandering because I do not want to derail or discourage the work that is already taking place.
I do not want to appear ungrateful, and my internalised ableism is in full force when I convince myself that I should feel grateful for being welcomed into parts of society because other parts are accommodating my disability.
So, if a disabled person doesn’t instantly gush over your attempts at allyship and inclusion, don’t be offended.
Simply hold your hands up and recognise your enabled privilege, appreciate you are on the right track, but resolve to bring disabled people on that journey so you remain there.
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Amplify our voices, listen to us and respect that we have so much to offer.
Please understand that the onus is on allies to do their homework on disabled people. If this was the case, maybe I wouldn’t feel so burnt out by constantly talking about our lives and struggles.
And while I have you, pop December in all of your diaries right this instant.
Because next year, I want everyone to acknowledge International Day of Persons with Disabilities. Believe me, it will make things so much easier.
Do you have a story you’d like to share? Get in touch by emailing [email protected].
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Constantly sharing my story, being vulnerable and almost pleading to the world that I’m worth investing in has started to take its toll.
