An open letter to support staff,

  An open letter to support staff and I want to say that this is not all support staff and care givers but I have to express this frustration that isn't just mine alone it is at boiling point when we have asked for change and the only way to get it is to wear the labels with pride, dignity and to not give up the fight.  If your having a negative reaction to this letter I would ask you to open your mind and heart and question why, as this is my lived experence of having " well trained expert,"s caring for me in my own home. 

 Dear Support Staff

I understand that this is your job and I am your responsibility, but can I tell you my side of the story and why in your words I don’t “engage,” It is on your terms because of a myriad of reasons that I can understand yet when I speak up, directly to staff I am considered the problem, I live to hear and yet I am needing to put up with clients you favor when I am needing help.

You seem to have no situational awareness to how loud you are, and I a higher functioning client suffer in silence because of it, I tried getting other services but now I am paranoid from the fact that because of your “ insurance” and privacy concerns, I can’t have them in the house, yet I am the problem, I tell you time and time again that I have super sensitive hearing but it’s not until I speak to a housing manager and tell them exactly  what I  herd that they realize and in response, you get louder as l you have the training and see that “ I am the problem”

But I am not the problem, I am not entitled, I am simply asking for the basics of respect, and dignity and for you to do your job with compassion and respect, I have to respect the house rules for your safety but I at times don’t feel safe in my own home. Yet you tell me over and over it’s my home yet I don’t have control of who comes in or not until there is an incident that labels me instead, of understanding that I  don’t see the world as you do and that is what makes me unique

The rules around what a support worker can and can’t do with me overnight one day I  am enjoying trips on a weekend when the house is tidy. Yet the next day, all trips need to be approved it’s like you don’t trust staff, in the office, but  they are still trusted to  give me my medication and help me, but it’s always on your terms.

So lets  forget about chose and control  on my terms but it’s the providers instead, I get that this is a job but why do you  make it so hard to trust staff and do the stuff I need to do and make my family confused as to why they are paying taxes to not get me the help I need because my house mates need it more, it’s not a competition but you make it so it is.
When I get another agency that has values that align with mine you tell me that it’s a privacy issue yet they don’t see my house mates at all so confusing and I get that insurance doesn’t cover them but why can my house mates who have a different culture from mine have there come in and support her, yet I am told no to mine.

You speak to me like I am a child, but forget that I have a work history and understand medication and health issues better than you,  you concerned about paperwork when I could use the help but am too scared to ask, you wonder why I won’t engage, here is your answer, I wish you would stop making it about you, and start to walk in my shoes.

 Chose and control you speak, but yet the polices you have who’s in control, and who can speak for me, I am an adult, yes I have disabilities, I understand respect and responsibility, but do you train your staff to respect me, and my wishes, maybe yes and may be know but it all remains the same, that when  you call me darling, or sweet hard, it shows that you have “ worked with me for 2 years or more but can’t even learn my name. You’re running late for your next shift, so you go on the dot as you don’t want to make their parents cranky as they still live in the family’s home.

I am “higher functioning” or low support needs, yet you seem to question what I need because you haven’t even thought to read the care sheet, but I get confused because if your so concerned about the paperwork why you haven’t read the sheet.  It shows me that this to you is a “for now job just to pay the bills.”

I understand that it’s a hard job a  physical job but your bad back doesn’t really count when I have to live in pain and fear of what is going to happen next, you get confused when I can’t watch the news,  its simple see that you forget that I live in fear of being abused.

You have children with disabilities so think that you makes you the expert well I guess it does but not on mine as you’re an expert in children but not in adults and what makes you so sure that I don’t understand when  I live in this body, and have navigated life completely without support.

It’s the reason I have a package and my parents and friends fought, but you question my disability until I break and then it’s questions left and right, support means knowing me and knowing what I like to do instead and not protecting me from the storms of life but equipping me instead, you  change for a week or so until you know that the office isn’t watching you and have excuses left and right but change is hard for everyone an  yet you wonder why we still don’t give up the fight we start blogs and social media and then its game over as you see that the control is in our hands and we wont give up the fight to live with dignity and ask for the basics for you to do your job.