Life lessons and rambles about life with a disablity.
So, I debated long and hard this post about writing due to
the people involved and we are still dealing with the fallout, but I will do my
best to censor myself and not throw myself under the bus. The first thing I need
to say is that I am no angel and get tired of advocating for myself. In the same organization.
Most people who have disabilities that are in the higher functioning
range are sick of hearing it, and sick of telling support workers what they
need, or even being dictated to by agencies, But what happens when a support worker
abuses their power and this happens more than you would think to the point that
there is a term for it due to the prevalence, Its called being care resistant and
it means that everyone when the client finally accepts care they have to do
extra work to gain the clients trust due to the fact that they can’t trust the
very people who are supposed to care for them. [i]
I have on YouTube and on this blog written about being
abused by support workers and I repeat that I am no angel but when you are not
game to ask for help or have a person whose support isn’t their path it creates
trauma, and this can take a long time to repair as they need to be aware that there
is what they call behaviours of concern in my life and I have masked these for
a very long time and this is where I am considered very high functioning to the
point I accepted that I was different as
a child but never re questioned it as an adult now I am questioning it due to
some behaviours in the past that aren’t ok but how didn’t I control them and it
was due to one support worker that happened to be related to management. I won’t
say where it was as I don’t want to retraumatize myself but let’s just say that
I know she is having to accept like the rest of her generation that she is
going to have to work, and that working with people with disabilities isn’t easy
as there is lots of different challenging behaviour’s, due to a complex
combination of factors.
That could be there disability,
there mental health, their physical health and there family dynamics, think
about someone who has little to no family support or the family is separated by
physical distance, in a housing setting compared to someone who has family support
[ii]and
has been able to make something of themselves so is able to work, or to run a business
or volunteer vs your whole social life
being centred around the day centre due to your background.
Both of these are challenging in their own ways due to the person
way they were brought up, funding and the simple fact of safety is it safe for
the person to be left on their own. So this could be another thing to consider and
reflect on, but we are seeing a greater awareness to what support work is and
it’s not easy and for someone to come into someone’s house is a big deal you
need to feel safe and secure in your own home and to get on if you live with flat
mates, or even if the person is in a romantic relationship this can be another
issue all together due to the fact that this makes people uncomfortable but people
with disabilities do want romantic relationship and do have sex.
So how do we mange that with other peoples need and right to
privacy, also the fact that it’s someone’s work place this is an ongoing
discussion and I am seeing campaigns over on LinkedIn around support providers
not dictating what you do and being able to go out and to stay up late, it’s a
great idea to consider what your support providers are saying but they can’t
protect you from natural consequences of your actions.
There needs to be the correct paper work in place to be able
to restrict someone’s access to things that a person with a disability would
have access to so this being there house, food, education and to people as well
as using chemical restraints on them, so we are seeing a push towards having restrictive
practices removed but I know of some cases that the support worker wouldn’t be
able to support a person without them,
at times and this person isn’t exactly attached to reality so they need 24/7
support and they do have behaviours of concern.
I know in going back to mine aren’t extreme but can come
from left field at times and come from many years of being required to do what
is called masking, this in very basic terms is [iii]
putting on a mask to fit in the non-disabled world and then having to put
another one on when I go into the “disabled community” as the disabled community
is very much stratified in my part of the world and that is a whole other blog
post about the disabled community but within it there is a lot of politics and
cop outs due to people not knowing the difference
between a disability as a reason and a disability as an excuse, I am not saying
that every person with a disability should be working full time and an inspiration
to others, but being able to take some level of accountability, for their actions.
So this for me looks like taking accountability for blowing
up at a support worker and being the truth teller, I know that blowing up at
her was wrong but it exposed what she wasn’t doing in her job and believing
that she could get away with it in that she was related to management, and was signing off on shift notes that she
had done tasks that she hadn’t and had put the residents at risk due to the
house not being up hygiene standards and my house mates behaviours of concern getting
worse as well as her jealousy due to me having a much healthier support network
than her.
Also we need to remember that in general that people aren’t going to like everyone and if
they do there could be a couple of
things going on, one they are a people pleaser, they like you or they need to respect you and be polite
due the fact that they work with you or you have power over them so this is
where we circle back to support work, in that support workers can hold an enormous
amount of power over people and forget it’s about support and helping them to grow
and be independent, and independence doesn’t look like doing everything for yourself
as even people without disabilities need to ask for help at times and have a
village around them, or that is the ideal.
So many people see that what we perceive as co-dependence in
society isn’t co-dependency it’s actually interdependence and this is much more
complex than people expect it to be as interdependence is healthy.
Its healthy due to the fact that its what we as humans both
disabled and no disabled should aim for so this being that we are able to do
things for ourselves but when we need help, we ask for it and accept it but
accept others boundaries and limitations at the same time.
One thing that I have had to accept is that in my singleness
( I do have someone I like but not game to admit it to them openly) I have known
that I am there first priority and this
is ok that I have to wait until people have time to do something with me and
this for me is where support workers fill this gap of companionship, helping me
to edit the blog and YouTube and to help me to keep my life on track, both in a
practical sense and a realtionship since.
I Know that my team now knows my need and behaviours and quirks it really does
work better for me and asking for help and being interdependent isn’t the same
as taking advantage of people and I will leave you with this example but I am
going to do a whole other blog post on this. I have a support worker that is
younger and has elected to do the breakfast shift due to them being a higher
rate and it provides both her my housemate and myself stability and routine
after having nothing due to me behaving like a spoilt brat, but she comes down
if I haven’t got myself up and she makes sure I have a coffee then gets my house
mate up and makes sure she is on track for going to the day centre and then she
comes down and makes my lunch with me. So
this is the question am I taking advantage of the support worker due to the fact
that I am capable of making my own lunch, but I am at the same time likely to
make what can only be called chaos lunches and they won’t sustain me, so she
knows that I am eating and guiding me to healthy chooses and this then allows me
to be able to help her by hanging out the washing in thee house as well, so to
me this is accepting support and guidance and it’s hard to accept help as an
adult but this younger support worker has such dignity and grace that she knows
what support really is, so we need to be able to have the conversation around
what is and isn’t taking advantage of a support worker and what is being lazy.
As what one person could consider lazy the other person might consider smart or
even efficient.
It's a crazy world to dive into and this will be my coming content.
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