A chat about the reality of living with a disablity

So this video  and this blog post came on the back of what I outlined in my post about what a support worker can and can’t do for you and we see that it’s view count is still rising, and I think that we now need to step back and have a little chat about the reality of living with a disability and  doing some myth busting around it but I need people to be aware of a couple of things before we dive in these being that these are only my lived experiences and not universal experiences but we see that people do have to deal with this all the time and it might not be as a result of your disability but as a result of poor support and care and this we see can lead to a massive amount of harm and we see that this level of harm can lead to very poor physical and mental health outcomes and this is the first thing that I would like people to know that living with a disability isn’t “cute” or funny it is downright hard work and that is the second thing I would like people to know that I would love to be able to work a normal job but for me this isn’t possible.

People need to be aware that for some people including me, the NDIS and other comparable programs have made life better at times but at times also much worse because some support workers don’t understand the day-to-day reality of living with a disability and it can suck I am going, to be honest here as it is isolating, it is hard work and it means that I am more easily taken advantage of and that a person needs to be aware of this and that it’s harder to deal with as a get older and see my “able-bodied peers” achieve normal life milestones but I am unable to achieve said milestones due to the level of care that I need.

 This is something that is still ongoing in that we need to fight for funding and this is a constant fight to receive funding for the basics, housing, and care, and it adds to the isolation that people have that there is a fundamental lack of understanding of what a disability is by people running the care programs and they see it from an academic perspective and not a lived experience and feel that it is ok to tell us how we should feel and this isn’t a great way to do business.

To the point that I have had to educate some support workers on what a chronic illness is and that it’s not going to go away anytime soon and that I can’t do anything about it except what I was doing at the time and listening to my doctors that was asking for support was what I needed to do.

 The NDIS  was a program that was supposed to improve the lives of people with a disability but it hasn’t in some cases it has actively caused harm and neglect and this isn’t great and I am lucky that my housing provider is a values-driven organization and gets disability and listens to its clients but some providers treat their clients less like clients and more like cash cows and aren’t willing to put in the hard work of supporting them. As it is hard work and can be challenging for support workers to work with clients with challenging and complex behaviours.

As well as working within the limits set by either the NDIS or their agency on what they can do for someone this will vary from not only provider to provider but from support, worker to support worker.

 We see that this can be very difficult to deal with as they don’t want to accept that a person isn’t happy all the time and that they need to be supported differently and if a support worker doesn’t have good active listening skills then we see that people need to be aware of this that active listening is a soft skill that a lot of support workers need to have.

The other thing is that at I hear is I would love to have time on my hands, yet as much as I see you winge about work and going back to the office or store it provides meaningful connections and something to do and provides a sense of self worth and connection and you can bitch about the boss together, but we see that unless you have the funding for a day centre and fit into the day centre living with a disability can be incredibly isolating and this can lead to a massive amount of mental health issues and we see that “sheltered workshops” aren’t suitable for everyone and are legally allowed to pay less that the minimum wage so I am no inclined to go and work for less than the minimum wage as I have worked in the past and might be able to in the future or to be able to monetise the blog and YouTube, we see that this is something that we need to be aware of that people need something to do to maintain a sense of self-worth, a hobby or something that keeps them connected into society and we see that this could be a myriad of things starting with community service organizations or as obscure as online fandoms that meet up offline as well and online fandoms I find that have a great sense of community for people who have limited communication skills and need connection and can find it online.  

You need to be a seasoned Redditor to navigate that side of the internet due to being able to be anonymous on the sight and this is both its blessing and its downside but there are good moderators as well.  But finding the right subs as this is the term for Reddit communities can be difficult as the NDIS sub that started out as clients only has been flooded recently by providers trying to find clients so it can be difficult to moderate in this manner as the moderators are generally unpaid volunteers, that give up their limited free time to do this moderation and we see that people need to be able to have a safe place to go to be themselves.

I also hear I would love to be paid to do nothing but this for some people with disabilities couldn’t be further than the truth due to the fact that they would love to be working and others find other ways to contribute to society such as volunteering and I believe that there are some conservative estimates that suggest that the work done by unpaid volunteers if they needed to be paid would cost the government and the business community $17.3 billion so this wouldn’t be possible if they had to pay that person or if that person was required to look for work.

 

This is just the start of the conversation, and I will be working on another post about living with a disability, but I am open to hearing others’ thoughts about living with a disability and what comments you hear that make you shake your head.