The Art in the Prison of a Disabled Life
Imagine a world where every aspect of your life was controlled…except for one.
Imagine a world where your every move was monitored. You were told when you could eat, when you could use the bathroom, where you could and couldn’t be and when you were allowed to do all things. Imagine that during most of your activities you had to have someone in attendance…not a friend, not family, but oftentimes someone who you didn’t know. For some, this attendance would not only be mandatory during regular activities, but also during your moments of personal care, such as during your bathroom visits.
Imagine that this world was created, apparently, for your own good. Strangers were making the call as to what you could and couldn’t do, and you were grouped together with others you didn’t chose to be with. Many of the people you are grouped with have substantially unorthodox behaviors, which can seriously disturb you and those around you, but you can’t leave or get away, you just have to get used to it, and you’re expected to tolerate and accept all things even when they and you spiral out of control.
Now imagine that you are taken to one place each week, but this place is different. It is two hours run by people who truly empathize with you, who want to hear your ideas, who encourage you to express the real you. For two hours a week, you experience a type of freedom that is validating, that is real, and that is deeply felt. You can share your experiences, your feelings, and express them in a way that’s totally accepted and encouraged. You learn different ways to explore yourself in a way that the real world discourages. For two hours at least, you are finally free to be you.
This story isn’t a film plot
This isn’t some reverse utopia story or plot from a big-brother-style novel. This story is real. This is the true story of many of the people I work with who live with disabilities. Essentially they live in a system which is easily akin to being a prison system, designed to control and manage humans and their behaviors, in order (ironically) to enable them to experience “freedom” in the community.
For two hours a week they come to see me. I work with them in a class of creativity and freedom. Sometimes it’s drama and performance classes, sometimes creative workshop classes. During these two hours they are encouraged to express themselves, and to share themselves in a way that the real world doesn’t understand or even want, for the most part.
These amazing people have extraordinary stories to tell and expression to share. It’s easy to mistakenly think that the hardest thing about living with a disability is the disability itself. In truth, oftentimes the hardest thing is living in a world where you are not accepted, tolerated, nor encouraged to live within, where your freedoms are taken, and you are herded through life by strangers like cattle. A world where the rate of pay for those strangers taking care of you is so low that many of them are uneducated, and unaware of the magnitude of influence they have in the lives of those whom they “manage”. “Carers” are often not educated within the workplace in anything more than procedures and policy, and not in how to care for a human being who is psychologically vulnerable and in need of a great deal of support across the deeper levels of what it is to be human. Carers are also often paid less than cleaners, such is the devalue of their efforts, so even though we have people in place to “look after” our special needs community, rarely do they have the skills and support to work within the context of “meaning” in a client’s life.
Imagine you have one place where you feel you can breathe
So imagine that in this world, where you are essentially treated a bit like a number, and locked into a prison-style existence, but you do have a single weekly session where you feel you can breathe, be real, are totally accepted encouraged and cared about. In this place, your disability is celebrated as a unique opportunity to express yourself in ways that others can’t, and you and your opinions are embraced and nurtured. In this one place, your dreams of a world where you can be free become reality. For just 2 hours.
Now imagine that the people in change saw these classes as simply a “nice thing for them to do for a couple of hours”. Imagine that they decided that because the classes were more expensive than a visit to the bowling alley, they cut the activity for a while. Imagine that other people in charge higher up decided that bowling was a much more cost-effective outing, so the classes get cut permanently. Imagine those advocating for you were told, “oh please, these guys don’t know the difference between a drama class and a trip to the shops”. Imagine that.
Now imagine you are you, and you decide to go to a theatre show to see a group of performers with disabilities because perhaps you are covering a story for your local paper, or your friend suggests it has good reviews so why not, or perhaps because you have free tickets, or it’s part of an exhibition. But something unexpected happens to you during the show. You go from having the attitude of “isn’t that nice that they can be given the same opportunities that others get”, to “OMG, why can’t i stop feeling emotional?”. You are touched and moved beyond your personal narrow view of the world, because you never realized the emotional power that a disabled person might have, and you didn’t know you would be so affected.
Welcome to my world.
Working with people living with a disability and mental health challenges is a privilege I cannot even begin to express through the clumsiness of words. There simply are no words that can come close to sharing with you the value and the importance of this work. This is NOT a “nice thing for them to do”. This is life-affirming, truth, passion, and self-expression of the highest artistic and psychological value. This is where people can actually find themselves within the trapped shell of circumstance. This is where they can deeply connect, where they can work their shit out, where they can experience real validity and true peace. And for many, this is simply a place where they can get a few moments break from the real-world reality they find themselves in...a world not of their making.
I have been working in the field of Arts & Disabilities since 1990, which is well over 25 years, and the challenges remain. Funding is scarce, support is limited, and the true value of this work is only recognized by the few. When you see the suffering, the heartache and the dehumanization of people, it’s difficult to fathom how we can turn a blind-eye to the truth. Quite simply, Arts access for those living with disabilities is STILL undervalued, and misunderstood, even now with science backing our claims.
Change is needed.
Until the world can see the true psychological and artistic value of the work we do, Teaching Artists like myself will continue to swim around in the fishbowl of the converted, frustrated and tired from decades of advocated for the work and the people we work with, as it falls on deaf ears and ignorance. For me it has been a lifetime of juggling the work, the lobbying, and the shame of not doing enough. In an ideal world I could do this work without the need to be paid, and I could spend time educating others to carry on the work, and to advocate for a desperate need that I know only too well. But I can only do this work part of the time, because I too have a family to feed.
We live in a world where the need to maintain control and order is at the fore, and where self expression and the individual comes last. We are shocked by injustices, but are reluctant to change, holding on the our safe realities which we like to believe most in the world is living in. The truth is that life is very different, and for those now living with disabilities which were acquired later in life, they know only too well how easy you can fall out of the world, and be trapped in the prison of the disabled life.
So where do we go from here?
We never stop. We keep banging on the doors of change until we can see tiny cracks of light, and then we keep on banging. We call from the rooftops to spread the word of what is going on, and spend our time convincing others of the need to improve and create opportunities. We try and raise the funds to keep programs running and to get new ones off the ground, to educate educators, to educate communities, and to share the story of what makes this work so important. We remind each other of what being human actually is.
I’m an eternal optimist, always seeing the glass-half-full, so I have faith that we can still keep making changes for the better. If you would like to support the work that myself and others are doing, even in a small way. Please clap this story and share it if you can. If you would like to share more significantly, please join me through Patreon or share my Patreon page so that others might also have the chance to get involved. https://www.patreon.com/taniarose
Tania Rose is a Counsellor, Teaching Artist, Musician, Mother,
and Author of the book MINDFUL NURTURING — Parenting in thoughtful ways