Things that frustrate me as a person with a disablity.

This is going to be a very personal blog post however I see that people will resonate with it as we all have things that frustrate us, at work, play, or even people in our lives that do rub us up the wrong way but it’s not intentional.

These are a couple of things that have annoyed me and I have been bottling them up for a very long time as well so this is something that we don’t talk about the day-to-day things that do annoy a person with a disability and it’s something that we do need to talk about as we see support workers talking about this and I have witnessed support workers talking about clients in public as well.

A support worker came to work sick and gave me covid making me miss my nephew’s first easter as well and affecting my health. So, disregarding us as humans and treating this as an” ordinary job and it’s not an ordinary 9-5 job as you are caring for people, we see that this becomes a massive issue.

As well as being dictated to in whom I can and can’t have in my house I have gone to the commission and I am in the right in what I can do and being able to speak up for myself and seeing the heads of service providers go on power trips and not accepting the legislation and labeling
me as a trouble maker due to knowing the laws and regulations and this makes more work for them as well.

I am not sure if I have been labeled as a troublemaker or if this my slightly altered perception is something that I need to consider however I have observed this level of perceived thinking in my support team in the house, and we see that when we see that this is something that people do experience from support works as the gossip is worse than a high school, and it’s not always accurate as well. But we do see that providers who run large organizations Aren’t always up with the legislation and are more used to having the power in being able to dictate what happens to a person and where they can go.

This is something that I would advise people not to get into and to stay away from the gossip as it can get you and your support team in a lot of trouble, and this can become a massive issue in the he said she said, and getting to the truth can be a massive issue as well.

As you are living with someone as well and this is something that you need to be aware of as well. The person that you are living with might have a very different grasp of reality as well.

However, having person-centered care is a very challenging thing for large providers to care for someone who may not be able to care for themselves healthily, but we also see that people do in a way need to be able to have a say in what happens to them. This is where we see the providers need to have a delicate balance between, person-centered care and providing for a lot of people, I have always benefited from having two support organizations.

We see that it does provide some conflict in support workers not stepping on the responsibilities of the organization and being respectful but, it does provide some protection for me as in my housing organization due to some support workers who were taking advantage of people in being able to transport them. There became a blanket rule overnight that trips needed to be pre-planned, however, I have seen this have very unintended consequences in that you had people who are only with this provider, and they were hamstrung in how they get groceries as there wasn’t a lot of thought put into how this would be rolled out as well. As they needed to get a car from a carpool.

This rule has been relaxed now but we see that it took some planning to be able to iron out and we see that this is where we need to be able to have alternative plans, I thankfully was not affected by this as I was able to get out. Because I had a separate community access provider.

This is where we see that they need to have clear and transparent policies and solid rental agreements however in a Sil house you need to be able to move if it’s not working out and to give a month’s notice without losing your bond and this is to be able to give a person their dignity of risk and choose and control as well. However, we don’t see a lot of movement because there is a housing shortage as well.

This was a very healing post, and I will be talking about it a bit more as we do need to talk about the difficulty and the annoying things of being a person with a disability I know that they are very first-world issues but we see that this can be a make or break for some people and it might be the straw that breaks the camels back. As we as people with a disability have for so long been told what we can and can’t do and this has been challenging for some providers as well as they are used to having the power over a person. This is where the dignity of risk comes into it, as well as choice and control.

I will be talking about the dignity of risk and choice and control in a later post.