I am still in my unit as I write this and I must admit I am stuck in the past and it is thundering outside and I am unsure if I should even be on the internet, but I am starting to second-guess the blog as I am starting to get tired and thought I should give it up but I have started with a new support company and they said something very encouraging and I am in the long and tedious process of moving it over to a professional website so I have control over my content. To be able to work with sponsors and is something that I would love to do and work with people who want the best for me.
However, what they said was very encouraging to me and it made me rethink my decisions about doing the Blog as they said that they loved what I was saying that it is a great resource, and that we need people to speak up. But this is honestly where I struggle so I am going to start putting myself out there due to the fact that people need to be aware that the NDIS hasn’t solved everyone’s issues but it has made life a lot harder for a lot of people because it has become so politicized.
But what people don’t see is how it helps a lot of people who are then able to go and work because they wouldn’t be able to otherwise and they are then able to help themselves. However it all really does depend on your funding and we have seen that there is a trend towards people who have higher socioeconomic backgrounds to have better packages as they can afford to go to the specialists that we need in our lives to give us the needed reports and we see that this is where people are able to receive better packages, but we then see that people are being able to get help through advocacy programs.
I wanted to touch on the advocacy programs rather than activists as I realise that in a previous blog post I was savage about what I said about activists but we need advocates that are on the ground and are working towards a common goal of achieving better life outcomes for people with disabilities and this could me social interactions, it could mean transport and it could mean for parents to be able to take a break all things that mean a lot to people with disabilities due to the fact that they are otherwise unable to get the help they need and this leads to family and friends having to care for them and this is where the NDIS call this “informal” supports and this can lead to challenges that you need to be aware of that people might face, that if you put down your informal supports as being able to support you then this is classed as support you have and your funding might get cut and this is a massive issue for a lot of people they have given up on the system due to the fact that the support providers are taking a massive cut and in some cases reducing services and we see that this is where we need to be aware of things that I have touched on in previous posts such as,
The digital divide
The politics of disability
The ethics of disability support
The ability and the use of restrictive practices ( and I do believe that they do have their place
The ability and self-determination of people with a disability to lead independent lives and includes – romantic relationships and the ability of people to be able to connect with others on their terms.
The ability to have a job or to create their own business that is self-sustaining and this is where I am at a massive cross roads of do I keep going with the blog but I am now at the point where I am willing and able to write copy for other people so I am going to update my about me page and show what I can do as we do need reasonable advocates that are able to talk from lived experiences of disability and I have experienced the best and the worst behaviour’s when it comes to support and care and I see that care is the word that we need to use a lot more in support work as there is an unwritten rule that I see says that we need to accept bad and unsuitable support, however this isn’t the case we need to transform the system from the inside out and work towards it being a better system for all, and this is where the challenges lie for activists and advocacy networks and we see that people need to be aware that disability activists take a massive risk when they are speaking out against the things that they see due to the fact that people need to have care and there are some people who simply should be support workers due to the fact that they are power hungry or believe that their way is the best way when it’s not the only way of doing things and we see that there is restrictive practices sneaking into the most mundane of places such as Sil homes where they aren’t allowing people to choose their community service providers. The vailed excuse is that it’s a breach of privacy to other clients.
However, if you have an ethical support agency we see that people can keep the confidentiality and have that availability to support the client and we see that this issue is getting worse and not better and I do see that some rules you don’t need to like but need to accept and this is where things get complicated as I admit that I am struggling with an internet addiction but given that I only get 9 hours of community access time what I am supposed to do at the other times – I do some volunteer work but when I have bought of fatigue or high pain days what I am supposed to do with myself and this is where the nuance needs to come into it in being able to seek out support for daily tasks as I get unlimited help in the housing facility that I am in but we see that people need to be able to choose what they want to do and not be forced into what they don’t want to do and this might create some issues but we see that they with respect and communication on both sides do help.
But then comes the question of the emotional cost of disability so this is something that I will dedicate a whole blog post to on what happens when you can’t emotionally cope with your disability and the consequences of it, such as Austic burnout and ADHD masking, as we see the messages in society that says that your Ok and that neurodiversity is OK but then if you have had a long resume gap it’s a risk to employers and you’re a risk to their organization, but if you have your own business people will question what your doing to be successful so I see that as a person with a disability we can’t win the game and so we are starting to question the rules of the game and how it is played as it doesn’t seem fair that there is two sets of rules that we are playing by one for people without disabilities and one for people with disabilities and we see that the rules for people with disabilities are constantly changing and this isn’t ok, it’s something that we need to be aware of and we need to constantly challenge it but we see that people who are all ready in the game don’t question the rules that we are playing by and that we need to be aware of, however if we seek to challenge them we see that this challenges the very foundations that the persons life is based on so it becomes an issue for them to be able to see different points of view, but we need to be aware of the great advocates that are all around us in the community sector and that are doing an amazing job as they need to be recognised as well by seeking out a community you seek to belong and by living by your values we see that this is where life can be given some meaning as well as many people with disabilities can lack meaning and connection in their lives and this is where I will do a blog post on this connection and how you can connect on a very real level with the person who has a disability and helping them in a very real and meaningful way.
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