I am sitting here on a Sunday morning waiting for someone to pick me up from my housing service and I need to realize how lucky I am as I am not as limited as some of my friends living in Sil housing in the same area.
I also see that some providers are definitely better than others regarding how they approach housing and living with a disability. They don’t “kick you out of your own home” and they don’t try to make you feel bad for having a disability. When I was searching for topics I saw a post on linked in about Sil houses and it did resonate with me that some people are told when and where they can go out due to the providers “needing” to accommodate others, this isn’t the way to do disability.
Or in some cases even life and we wonder why people with disabilities have poor mental health outcomes when they are given the same options as others, well it’s at a greater emotional cost to others, and we see that this is the issue it’s the emotional cost, the not being able to have overnight guests, the treating adults like children, the sometimes over protection but then the under protection as well, and we see that this then bleeds out into society.
As disability doesn’t exist separate to society and a society is judged on how it treat’s it’s most vulnerable and in Australia we do reasonably we that we have a reasonable social security system, we have access to public hospitals and have reasonable access to health care as I do know that the lack of doctors that bulk bill is effecting people with a disability getting access to health care and I realise that it’s going to get worse before it gets better but I digress.
I was also talking at a this event that I was at and I needed to let my house know that I was going I had the thought that however, I do understand why but why am I not given the dignity in return to know who is in my house and what to expect from them and have the consistency of care around this topic.
I keep my community access team separate from my housing and I know that this does provide some conflict at times but this is the reality of choice and control and we see that people need to be much more aware of this however I do have some responsibility to the providers and this is to work with the support workers and not against them and to see them not as friends but as paid support workers so I don’t get sucked into the trap of believing they are my friends when they aren’t and that they are paid to spend time with me and to be a formal support system and to prompt me to do things that I don’t want to do an to keep me on track.
However, this when I wasn’t aware of the limits and boundaries of a support worker we see that this did become an issue but I am finding out that this is more common than I would like to think and we see that this is a very bad thing as there is legal reasons that people need to be aware of that we see that people, need to be made much more aware of the boundaries of what a support worker or direct care giver can do and this can get very messy depending on the level of they need. So a support worker needs to get comfortable with the uncomfortable and to be able to understand that a person could potentially have maladaptive behaviours, addictions, or be not at the developmental level that they need to be at and to be able to accommodate that.
As well as being able to judge when people have the common sense and knowledge to be able to make decisions around their own lives and to be able to seek out companionship and “physical intimacy,” which does require the presence of mind to be able to have physical experiences with others and to be able to be aware of the consequences of these actions and to take appropriate steps to protect themselves emotionally and physically as well and to not be restricted in these life experiences.
As some people with disabilities are and just because they need support we should be denied having relationships that extend beyond platonic friendships and even be encouraged to seek them out as physical connection is a basic human need and we see that this is denied to a lot of people with psycho social disabilities, while I do agree with this in principle in the case of where a person is physically incapable of understanding consent, I do understand that this is where the risk to a person safety needs to be considered and we see that boundaries are often violated by unethical support workers in tricking their clients into believing that they are a friend and this could leave someone who doesn’t understand boundaries well into believing that this type of behaver is OK when it’s not.
I know that in my past I was manipulative and I didn’t realise it as I was a people pleaser but didn’t understand why I was never happy now I am reaching for my own goals we see that this is where I can be much happier now because I am not living out other’s goals for my life but my goals for my life and a mix of what others want for me as well.
I see that we do need to live “ different” lives and that is ok but we need to start the conversation around consent and disability. As we seem to equate disability as not being able to make decisions and as the “eternal” teen and in some cases this is true but we see that in others this is not true and it is very true in the case of physical disabilities that we all recognize, such as blindness, deafness, and limits on mobility as well. As well as being nonverbal but being nonverbal does not mean that people have nothing to say. (I will do a blog post on that topic)
I have been talking about very personal topics and I do see that some people will have difficulty with the fact that we are talking about intimacy and disability but we need to start the conversation around consent in disability at some point and the rights of a person with a disability to live a life without restriction and this does mean seeking adult companionship where it’s appropriate and along with this is providing access to the opportunities to meet people so this is where I see that some providers do have day centres and some providers are doing social groups but why aren’t we thinking outside these lines and thinking about, dance classes, painting classes, being an adult volunteer in personal development groups such as Scouts and Guides as well.
In smaller towns, this might be difficult but we are seeing that providers are being much more progressive in the way that they handle the need for intimacy, as well. As people with disabilities are at greater risk of social isolation as well and this is where Sil houses are a great invention and promote a sense of community as well, but there needs to be balance in their approach to how they do guest’s as well.
I am not talking about common sense restrictions for a person’s privacy but common sense for people, who have the capacity to have “physical intimacy” such as curfews and allowing the person to sleep occasionally at the other persons house, without having to face the consequence’s of feeling like they have to explain to the head master where they were. So facilizing through apps where they can put where the are sleeping or even having it arranged on a regular basis is what is needed so what are your thoughts on this as “physical touch” and intimacy with what ever gender you are attracted to is a something that as humans we do need and we do need people to respect that we do need this and can be “innocent” for ever and I see that even having professionals come in and teach about personal hygiene and consent is probably for the best as some support workers aren’t emotionally equipped to teach about consent and boundaries as well and I know that it’s not something that is talked about as well, but it needs to be as support workers don’t need their own boundaries violated as well as behaviour’s that shouldn’t be tolerated are tolerated and we see that long term this isn’t a good thing as well, as it leads to a person pushing boundaries more and more and not understanding that it’s rude at time and I know that this is a controversial statement but your disability if your capable of understanding consent then they are capable of understanding that you disability isn’t a free pass for being rude and I feel that some people are excused from bad behaviour all of their life because they have a disability but this should be allowed to happen I know in some cases that it’s a reason but it should never be an excuse and so many support workers that I talk to do quietly agree with me but can’t come on the record but do see things that are very disrespectful to others and we see that this needs to stop and this is where having adult relationships comes into play as they hold us accountable to others as well as giving us an insight into the lives of others and how they live without support their support comes in the form of family and friends.
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