Andrew Morrison-Gurza gives some insight into a daily experience where you have little or no input about the most personal aspects of your life.
Imagine this: You wake up to your attendant coming in your home to wake you. As your eyes readjust, you notice they have brought with them another person, a ‘trainee.’ This individual who you have never met and whose name you dont know, gets to see parts of your morning care routine. This typically means that 5 minutes after meeting them, they will see you in all your glory (something I would like to think I reserve for at least potential lovers).
The major problem with this, is that the Person with a Disability is given no say in who this person is, they are unaware of the individual’s background or knowledge of disability, nor have they been given any opportunity to connect with you as a Person – to find out what makes you smile, laugh, etc (sidebar: nothing makes me smile at 8 a.m. N-O-T-H-I-N-G). Moreover, when the care staff start talking about you, rather than to you whilst bathing you…nothing could be more infuriating…. “What does he need?”, “What does he want?” Let’s, just for a moment, examine the emotional impacts of this behaviour: It removes the Person with a Disability from the process entirely; they are no longer a human being, but merely a ‘consumer’ or ‘client’ to be taken care of. Imagine, you are naked; all your glorious bits on display, and you are being washed/cleaned, while being talked about, but never spoken to. What message does that send to you? It tells you that you are not worthy, you have no voice, and you are not a person involved in this process. In essence, you are being institutionalized.
In Supportive Housing programs, their apparent goal is to give you your independence: except often times (every. Single. Time. in my housing situation) you are not involved in the hiring process. You heard right: the experts in their own care, lives and disability have no say in who does their care. That is juxtaposed with the tired rhetoric suggesting that I ‘have a right to my independence’ (often regurgitated by individuals who are so disconnected from the reality of disability). Ironic, when I can’t independently decide who gets me up, or who is in my home. I am essentially trapped; able to ‘have’ my independence, I just can’t access it… Yet, they would never call themselves an institution – choosing rather to spew disability positive language while continuing to propagate a culture of dependent, poor, cripples (this is the one time I don’t mean that positively). The scariest part of all of this is that in Ontario, there are thousands of PwDs waiting for this care – clamoring for a spot. Each of them thinking that it will bring them freedom, independence and personhood that all of our laws ‘promise’ we shall have. It is this Disability Awareness Consultant’s experience that this is not happening.
It is most troubling that these programs cling to old vestiges of disability, unable to harness the power of the game changers, the ones who want to truly move us forward in raising awareness. They simply choose to believe that ‘this is how it has always been done’. In essence, these supportive housing initiatives support us in playing the ‘sick role’. God forbid they would support us in signaling change for those of us living it day in and day out.
If I am being 100% honest, the thing that keeps me up at night is not the lack of awareness, the ignorance or the disregard for my individuality, but rather the gnawing fear that in 30 years time, I’ll still be here fighting for an independence that I will never have.
If you want to find out more about my efforts to raise awareness and my work as a Disability Awareness Consultant, and book me for speaking opportunities, please visit: www.andrewmorrisongurza.com
—Photo Tim Parkinson/Flickr
Whether you’re disabled or elderly the world just seems to pass you by. It no longer wants to wait to know what you think, feel, or need. Similar things often happen to children, but there is usually more of a built in care factor at work there. Hey, you can’t keep up with the rest of us in every way? Well, we’ll just decide how your life is going to be. You’re welcome…Ridiculous. Slow down, engage, and step into that person’s world for a bit. Because it’s also your world. Your fear of this reality is just keeping you from… Read more »