In 2015, we'd like to believe that the days where we institutionalized and housed Persons with Disabilities in places where they had little access to rights and almost no say in their daily lives, has long since passed. We want to believe that Persons with Disabilities are being treated as individuals, and that the care they are receiving within these systems is in sync with the rhetoric that tells us they are full members of society.
All of that seems well on its face, that is, unless you are living within one of these supported systems as a "consumer". If this is the case, the whole idea of individuality and autonomy comes into question, and those days of institutionalization don't seem so distant. I would like to illuminate some of the concerns that I have with the "supported housing" model, as someone who lives within it, and explain why I think it needs to be overhauled.
Let me briefly explain this model of care for those who may not understand how it works. Supported Housing is a government or charity-funded model where there are staff who work on a particular site, like an apartment building. The idea is that there is someone available to the "consumer" 24/7 when they should need assistance in their homes. These Personal Support Workers help with things like dressing, toileting, etc. and it is my job to direct how I would like my care done. In essence, they are an extension of me, and are there to do what I cannot. It seems okay, right? I will now share some of my experiences as a "consumer", and ask, "What would you do?"
1.Everything is Booked: The majority of these care programs work as follows: Your major activities of daily living; getting up, meals, etc. are scheduled. This makes sense because there are other individuals who need help. The problem arises when you want something that falls out of the purview of a booking time. I remember one time I had to go to the bathroom, and I was told that I would have to wait until my booking by a staff member. Could you imagine having to wait to relieve yourself? Do you book your bathroom times?
2. You are "Punished" for Self-Expression: Recently, I had an attendant who was putting on my condom catheter (to save time: this a bag that is a attached to a condom that I pee into; also know that there is very sticky adhesive on it, so that it stays on) on. This has to be very delicately done, otherwise it can REALLY, REALLY hurt (picture that scene from Forty Year Old Virgin). The attendant (who should be trained in how to do this) put on the condom but proceeded to grab all the hair from that area with the sticky adhesive, and in protest I swore. I made it clear that I wasn't swearing at her in anyway, I was simply expressing the pain. She proceeded to walk out of my apartment, leaving me half naked on my bed with no indication when or if she would return.
When I called to rectify the situation, management said that I was "not allowed to swear" and that I would have to "calm down". Excuse me? I am 30 year old grown man, and in my house I have the right to say whatever I want. It would be different had I been verbally abusing her directly, but I was careful not to do that. The next time you receive an unscheduled wax to your nether regions first thing in the morning, you try not to scream obscenities. Moreover, the idea of "punishment" in this instance is completely unacceptable and unfair. It suggests that I was somehow a "bad boy", and that in order for me to receive care I need to "be good". It sends the message that PwD must be angelic and sweet in order to receive care, or they will face consequences. Imagine how it feels to be lying vulnerable in your bed, hoping that you can get out of bed, because you said a bad word and "broke the rules". What would you do? Sounds institutional to me.
3. No Say in Staff Hirings: In many of these programs, Personal Support Workers are vetted by the organization with little to no input from the PwD themselves. There are not often hiring boards, and thus as a result, the PwD has no say in who actually enters their home. You are simply supposed to accept this person's help, without question - blindly trusting that they will do what you need. Who knows where they came from, whether their beliefs or lifestyle jives with yours, or if you'll even get along? Guess what: The truth is, no one cares enough to do anything about it. If problems arise with a staff member, and you have decided that you no longer wish to work with them, you are often forced into mediation and "promised" that things will change. I have done this numerous times and even went so far as to write to the funders begging for a change, only to be told that I would have to speak with the organization to fix the problem. This circular thinking suggests that the voices, rights and realities of PwD are never truly at the forefront of these programs - if they ever were to begin with?
The lived experience within these programs is vastly different from the party line, which promises us our independence and dignity. Our lives are booked, managed and mediated. We are even "scolded" should we dare express ourselves in a way that does not suit the attendant. We have no real say in how the care we receive is done - our rights are merely theoretical constructs, hidden away in policy books. What's more, none of these "rights" matter when you are in your alone in bed, half naked and in pain, hoping that your attendant will come back to assist you.
It is clear to me that the state of these Assisted Living and Supported Housing programs must be changed. They must connect with the individual on how it feels to live like this, and what the emotional impacts in fact are. There must be a concentrated effort to ensure that PwD are in control of their care every step of the way. The funders, government and management must ensure this. As of right now, we have the illusion of rights, and what's even more disconcerting, the illusion of access to them. In reality, these programs perpetuate the feeling of institutionalization PwDs constantly fight against - it has just been packaged differently.