@Fest From The Wheelchair Gallery

From The Wheelchair Gallery

When we talk about the inclusivity of those living with impairments or disabilities at the National Arts Festival, many people would agree that there is a need to have more wheelchair accessible venues and more wheelchair-friendly portable toilets at Village Green and Fingo Village. However, the conversation of inclusivity took on a new face at the 2015 Festival. This year, more than ever before, theatre productions and dramas featured not just performers living with disabilities, but – more importantly – able-bodied performers that opened up the conversation of disability in the arts, in particular the Festival. One small example of this is the cast of In the Wings, who gave a note-worthy performance, because to capture the physicalities of Spina Bifida as an ablebodied performer is challenging, but to have authentically raw emotions of a position you have never personally experienced was enthralling and moving for me, personally.

Irene Stephanou performs in her show, Searching for Somebody. The show is centred around a manageress of a dry cleaners suffering from multiple sclerosis. Photo: CuePix /Jeff stretton-Bell

Irene Stephanou performs in her show, Searching for Somebody.
The show is centred around a manageress of a dry cleaners suffering from multiple sclerosis.
Photo: CuePix /Jeff stretton-Bell

I locate these musings within my own truth as someone who has been living with Spinal Muscular Atrophy Type III, for 21 years. SMA 3 is a degenerative muscle disease where every muscle – from the heart and lungs to calves and hamstrings – gradually wastes away until you are paralyzed. SMA 3 makes it difficult or impossible to manoeuvre up and down stairs, to get up from a sitting position unaided, and, often, just to walk. While renowned Irene Stephanou, who has Multiple Sclerosis, made a standing-ovation debut with Searching For Somebody, the more important conversation we need to have is: why should we care about the inclusivity of those living with impairments on stage? And why should we have dramas that are centered around disability to conscientise able-bodied audiences on the challenges of living with that disability?

Stage performance is a starting point for the conversation on disability as it is often neglected in mainstream media – such as television shows, movies, soapies, and so forth. Many of you will be aware of how ‘invisible’ disabilities, such as bipolar disorder, and in general the social construction of disabilities are projected in disturbing and questionable ways. Popular shows such as Shameless and Empire, that cater to dominant audiences, respectively tackle bipolar disorder in distinct ways. For us, as people living with impairments or disabilities, the job of conscientising people is emotionally taxing work. It becomes even more difficult when we conscientise an older audience, which now has the daunting job of trying to unlearn a world that has been centered on the presumption that all who live in it do not have impairments of any kind. Sure, performers with disabilities conscientise audiences for an hour through a riveting drama, but what happens after? Where does this new-found consciousness materialise? Does it materialise at all?

Photo: CuePix /Jeff Stretton-Bell

Photo: CuePix /Jeff Stretton-Bell

Productions need to go beyond raising awareness on the effects of socialization on how able-bodied people engage with people living with disabilities. They also need to call out audiences on their able-bodied privilege. The problem is not seeing a ballerina in a wheelchair as inspirational, because society has constructed those with disabilities as being useless from the onset, which leads to amazement of those who are able-bodied when someone with a disability does something like ballet. The primary concern is our need for an education on disability which works toward seeing people with disabilities as equal human beings, before we see the guide dog or the wheelchair.

Disability needs to be taken seriously at a national level. The reality that it is not lends itself as an opportunity to the Festival, which attracts thousands from all over South Africa, to critique, on and off stage, the ways in which the centring of ableism places those living with disabilities on the periphery of society. The Festival serves as a great platform of teaching, through arts, which forces us to look at what their goal is. Microagressions – one young man saw me in my motorised wheelchair and shouted “That’s so unfair! I want one too!” (Whether he was referring to the disability or the motorised wheelchair which I only have because of the disability, I’ll never be sure) – during the Festival, mirror the reality faced by those with disabilities in South Africa. Our society is underperforming when it comes to addressing such issues – placing disability within the Women and Children Ministry in our national cabinet and the implicit implications of this. The Festival needs to be politicized and identify its purpose. We need a more engaged and active citizenry, one which is educated on matters of disability. This will then, in a much broader sense, serve as a way of demonstrating that education goes beyond the classroom. What better way to do this than through the arts?

DISABILITY ETIQUETTE

Many able-bodied people have never been in the presence of someone living with a disability, and this consequently has an impact on their offensive attitudes towards those living with a disability. There are some ablebodied people, however, who have been socialised to think of people with a disability in a particular way – this too has material implications. Here is a quick guide to disability etiquette:

Amenities:
Yes, the wheelchair parking bay is closer to the shops. Yes, the wheelchair bathroom is more spacious. But unless you have a disability, no, you may not use either of these amenities.

Assistance:
While someone with a disability is appreciative of help, wait for us to ask for assistance before you grab the wheelchair handles or carry the wheelchair up the stairs. The reality for those of us in wheelchairs is that the wheelchair is an extension of the body. Therefore, to touch someone’s wheelchair without consent is legally assault; people with disabilities do have agency and actually enjoy doing wheelies to go up stairs.

Language:
The term “disability” is about identity – there are many people living with impairments that would be classified by medical journals as a “disability”. However, you need to ask a person what they identify their impairment as before you call them disabled. “So and so was blind to my pain” is offensive. “My lecture fell on deaf ears” is offensive. Disabilities are not metaphors for able-bodied people (and sometimes people with impairments or disabilities) to make a point with.

Thembelihle Ngcai
CueOnline reporter

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