Month: August 2022

This article was written in response to the Late Late Toy Show in November 2020 

Image shows Ryan Tubridy in a Christmas jumper with santa hats on it, smiling and arms outstretched, with “Toy Show” in bright lights behind him

This year’s Toy Show was, in some ways, perhaps the most uplifting and successful in living memory; this year more than any other, the nation was hungry for a boost of optimism and Christmas cheer.  I gathered with my family in my Christmas pyjamas like I have every year since I was a child, to soak up the glitz and glee. And I was uplifted as we all were, by the sentimental impact of seeing adorable children’s dreams come true, by the generosity of the Irish people and the comedy of Tubridy being a bigger child than the children. 

But for me and many disabled people who I have since talked to, there was an element of the show that made us feel uncomfortable and disappointed.

Let me first start by saying that I commend the Toy Show for including more disabled children than ever before to review the toys. I believe the 2018 instalment was the first time a disabled child was brought on the show in this capacity, besides the usual pre-recorded Temple Street fundraising play montage. I was delighted then too to see books in braille being reviewed by a visually impaired child. This year was probably the first, in the twenty-odd years that I’ve watched the show, where children with other physical disabilities and wheelchair-users were brought in to review toys and it was incredibly heartening to see that change.

Last year Tubridy “made it his mission” to include homeless children on the show (which I was again thrilled to see being acknowledged) and who knows, perhaps next year will feature children in the abhorrent Direct Provision system. If this year was for featuring disabled children, then it is a good opportunity to start a discussion about how disability is shown in the media, and how far away we still are from a progressive understanding of what disability is.   

Most people are not aware of the media models of misrepresenting disability. These are a foundational element of Disability Studies as an academic discipline. They include the Medical Model, the Charity Model, and Disabled People as Inspirational. All of these are opposed to the Social Model, which is the view that disabled people themselves prefer. The Social Model acknowledges that it is not a person’s impairment that disables them, but societal barriers. It is therefore used to support the fight for enhancing disabled people’s rights to full participation in society. The Medical Model treats the problem as being solely in the physical impairment and is linked to the Inspirational Model in that disability becomes a person’s duty and burden to individually overcome. It also implies that having a disability is tragic and it makes non-disabled people feel that they should be grateful for their comparative state of being.

Among disabled people, we do acknowledge that having to overcome societal barriers at every turn, including the pain of being seen and treated differently as a child, and endless barriers as we grow up, does require the development of strength and immense and often heroic character. The children who appeared on the Late Late Toy Show are indeed inspirational for what they have had to endure from a young age and the shining characters they are. No one can possibly diminish their heroism or question anyone attached to them.  

In future, I wish to see all guests on the show participating and being treated equally, without the need for much demonstration of disability or mobility.

Our children’s hospitals should not have to struggle to raise funds in the first place; surely it is the duty of our Government to provide for the health and treatment of our children. How did we get to a place where this cannot be done without private funding and amassing of public donations?

The key point is to let this be an opportunity to spark discussion on how producers can make sure to sensitively involve disabled guests and media portrayal in a way which will empower and promote even more uplifting messages. Our understanding of what disability is begins in childhood, and the difficulties we face only increase as we get older. Let’s make sure our society is aware of the huge changes that need to be made at a structural and cultural level to really ensure the health, wellbeing and full participation of all our citizens. 

The following piece was published in the ILMI E-Bulletin, Friday 27 Nov, 2020: 

When I think back to my first ILMI AGM in September 2019, I remember I couldn’t help but feel inspired; it was the first time I had seen so many disabled people together in one room- so many vocal, proactive disabled people. I, like many others who’ve been initiated, realised we’d been missing this our whole life- a community, bonded by the drive to collective action and empowerment; a way to embrace our disabled identity, to find support through each other. 

Over time though, there was something in my reaction that I was wary about- I couldn’t help but see these amazing people who had achieved so much- more than I had previously hoped to- as inspirational.

As you know, this is a dirty word in the disability community, popularized as ‘inspiration porn’ by the late comedian Stella Young. I began to worry if my being inspired was a function of internalized ableism.

In some ways it was. The bar on the expectations I had for my own life was being raised by meeting disabled women who were mothers, who could drive, and who worked full time jobs- all things I thought being disabled would prevent me from achieving. But the crucial difference is that I always knew it wasn’t a matter of physical impairment, but that I felt the fight to achieve them in this society would be too much, too depleting, not worth the sacrifices to health.

When I think back to my first ILMI AGM in September 2019, I remember I couldn’t help but feel inspired; it was the first time I had seen so many disabled people together in one room- so many vocal, proactive disabled people. I, like many others who’ve been initiated, realised we’d been missing this our whole life- a community, bonded by the drive to collective action and empowerment; a way to embrace our disabled identity, to find support through each other. 

And that is the crucial difference between ‘inspiration porn’ and disabled people inspiring each other. “We are learning from each other’s strength and endurance, not against our body’s diagnosis, but against a world that exceptionalises and objectifies us,” said Stella.

Inspiration porn also contributes to the stigma of mental illness. It tells us that “The only disability in life is a bad attitude.” Although I have CP and use a wheelchair, I have been most impacted by mental illness, which I take medication for and manage holistically. My whole life I have been, in negative representation terms, the opposite of a supercrip- a villain- one who was unable to overcome her only disability of a “bad attitude”. And I still believe it; I still feel that I am the sole cause of my suffering and that my condition must be overcome and fixed.

Sarah Fitzgerald recently wrote a great piece on her blog where she shared her moments of doubting the social model. The internalised ableism we hold against ourselves takes time to excavate. The social model still isn’t recognised, and is seen as particularly audacious when it comes to mental illness. Rather than giving people the supports and reasonable accommodations we need to participate in education and employment, we are written-off as being too damaged to be functional citizens. So, when I see fellow disabled people pushing against these barriers, it gives me hope that I can do the same and reminds me of where the problem is really located.

When I think of some of the things our amazing members have achieved, whether climbing Mount Everest, overcoming institutional abuse, writing incredible poetry or organising to bring about political change in recognition of our rights, all while having to fight every day in a society that impedes us at every turn- that is inspirational. We shouldn’t have to fight so hard, but the fact that we do makes me proud to be part of this band of poets, intellectuals, warriors, creatives, leaders, and everyday heroes.  

The following article was published in the ILMI E-Bulletin, November 13^th, 2020

Image shows Nessarose, a lady in black with hair tied back, sitting on red cushioned and gilted wheelchair throne, looking ahead in the distance with Elfaba, the emerald green-skinned witch, in black hat and robe, kneeling beside her, listening. Both are against a a black and wooden stage background.

I have to admit, the #notawitch controversy surprised me. I thought, haven’t there been centuries of damaging cultural representations like this which nobody seemed to care about? I worried that the outrage to a seemingly fantastical deformity made us look oversensitive. But I was wrong because finally, here it is: a modern representation so blatantly monstrous even to the able-bodied that once you understand it you can’t but be horrified. Maybe, finally, what we’ve been saying for decades will be understood.

Unbeknownst to me, the limb difference that Anne Hathaway’s Grand High Witch displays in the recent 2020 adaptation of Roald Dahl’s The Witches, is exactly a form of ectrodactyly, or cleft or split hand, where one or more fingers may be absent or differently formed. The original book and 1990 movie only mentioned “thin curvy claws, like a cat,” which were likewise concealed in gloves. It teaches children to watch out for the terrifying signs of a witch, and I distinctly remember my childlike paranoia as I watched out for women with violet eyes. Other children now will do the same, and the fact that this might be the first time these kids will have seen their condition represented onscreen, and in such a context, makes it more devastating.

 We are all familiar with the lamentable trope of the disabled person as villain, the implication being that “deformity of body symbolizes deformity of soul” (Longmore, 1987). Most of us have at least one of these horrible portrayals that got under our skin, and you are not a snowflake for being deeply hurt by them. For me it was, funnily enough, another witch that I wish had been called out instead of celebrated: Nessarose, the Wicked Witch of the East from Wicked the Broadway musical of 2003. I was 17 when I saw it in the West End, and instead of it being a magical experience I was reduced to an inconsolable mess of tears on returning to our hotel room. My sister says she will always remember how much it affected me.

Nessarose was one of three sisters, including Glinda the Good Witch and the rebel Elphaba, who becomes unfairly coined The Wicked Witch of the West- unlike her disabled sister who “deserves” her fate. The injustices Elphaba experiences because of her skin colour (green) are central to the play. Some of that revolutionary spirit should have been transferred to Nessarose. But alas, weary of her “sorry life,” she begs Elphaba to cure her. “All my life I’ve depended on you and this hideous chair with wheels/Scrounging for scraps of pity to pick up and longing to kick up my heels”. And lo and behold, the miraculous walking scene, typically met with cheers from the audience.

Once “healed,” the boy who dated her out of pity decides she no longer needs him and leaves to find the woman he really loves. Enraged, she casts a spell on him with dire consequences, thus sealing her fate as a “tragically beautiful,” “alone and loveless” villain- the fate her condition warrants.
This portrayal damaged and embarrassed me and played on my teenage fears that I too was a burden who could never find love. Let’s hope the Wicked movie due in 2021 will not be a repeat. Despite what these cheap attempts at creating impactful characters depict, we are none of us hideous or tragic, there is nothing wrong with us and we are infinitely lovable.

#notawitch

Image shows the sculpture “Alison Lapper Pregnant,” a white marble statue of a woman with short cropped hair, naked with a pregnant belly, and a stump below her shoulder, against a blue sky with feathery clouds

The following piece was published in the ILMI E-Bulletin, October 2nd 2020:

“I am never going to conform to society’s requirements and I’m thrilled because I am blissfully released from all that crap. That’s the liberation of disfigurement.”

“The Sexual Politics of Disability,” by Tom Shakespeare et al.

I know I wasn’t the only one who seriously enjoyed last night’s chat with Clara, a disabled BIPOC fashion model and blogger who runs the Rollin Funky blog and Instagram page. This woman is glamorous, vivacious, and has a massive collection of HIGH HEEL shoes- yes, that’s right. As a wheelchair user, she is at an advantage on the runway; she doesn’t need to worry about stumbling. 

I have never worn high heels in my life. The appeal of Carrie Bradshaw’s stocked closet was always lost on me, and with it, a seeming rite of passage to womanhood. Can you be sexy if you will never walk like Rihanna?

Fashion and the cultural norms represented by it have an inescapable hold- somehow it was not until I was 26, after finally ditching the perpetual runners I’d had since childhood for knee-high boots and Doc Martens, when I realised how infantilised I had felt- shoes.

I had come to see my disability as liberating me from the shackles of societal beauty expectations. While able-bodied teens around me were developing eating disorders in their pursuit of the perfect body, I was released from suffering the illusion that my body could ever conform to such ideals represented in the media. Having a disability helped me see through the bullshit. I had to stand firm in my belief that there was no such thing as the perfect body and that all bodies were beautiful by virtue of being spirit incarnate. “And if the body were not the soul, what is the soul?” as Whitman my saviour sang.

And yet such media representations of able-bodied beauty are insidious. That’s why we need people like Clara making sure we are represented and seen in this sphere, which also extends to the runway of life. When we are seen truly embracing our bodies, our mere presence and existence is defiant in and of itself. When we love our bodies despite being told otherwise, we liberate others from these misconceptions.

As Clara said last night: “I think it’s important to embrace your body and have self-love for your body. A lot of the time when we hear about body positivity we hear it in relation to size- we don’t necessarily hear it in relation to different aspects of ability. Sometimes people automatically think that if you are differently abled you can’t be body positive and you can’t have self-love. I think it’s not true, it’s society’s ideas, this wanting to fix something, and make you feel like you’re not worth gold, and you most certainly are. You are everything that you are, and you do not need to be fixed.”