Gaining Control in Your Home, Care and Social Life

Look around you, it is clear that our whole society is based around people lusting for control. Whether it’s globally, politically, within our friendship or family circle or in our own household. If you are either a person with a disability or have anything to do with the disability community, you would understand that this lust for control is so particularly strong, as it’s evident that people who have a disability seem to lack control in various areas of their lives. So I am going to give you some tips on gaining control over your home, NDIS Supports and social life when you have a disability.

So, we’re going to start in what should be everyone’s extension of themselves, the home. If we think about it, our home should really be an extension of our personalities, either as an individual, family or group. So therefore it should be the one place that we feel the most free, safe and in control. While we talk about this we need to acknowledge the various shapes and sizes housing comes in. When thinking about the disability or the NDIS community, this variety of housing options and types seems to be ever changing from individual homes to supported group homes. It is for these reasons, and the fact that as people who have disabilities are more likely to strive for this control, that we feel that it’s important for us in the disability community to maintain as much control in our own homes as possible. Personally, I have found that my journey to this realisation has been constant for about four years, since I have moved out to my own supported living apartment.

As I have been an non verbal wheelchair user since I was born, it has always been a very progressive realisation of mine that I deserve the same respect and sense of control that all my abled bodied peers have. Drawing from these personal experience, the reason it is taken me, along with many of you, extra time to realise this is because our lives are so open as we need other people to help us with extremely private and personal aspects of our lives. This is why it’s  important for us to start to gently and maturely gain control within our own home. So here are some tips for us all.

I am going to start with my first point that I have already touched on which is ensuring that your home is an extension of yourself. With this comment, I do acknowledge that the ability to maintain this control can come in many shapes and sizes just like our different housing types. For example, if you live in either a group home, share house or even your family home try to think about what sections of your house belong really to you and you are responsible for. Once you establish this and how much impact you have on the general areas in the house, I feel the next step is to think of what your situation would look like if you didn’t have a disability. Ask yourself, what’s acceptable in our mainstream community whenever someone walks into someone else’s home…. Do they walk in and instantly critique how the home is kept and attempt to manage the person’s way in which they manage their home? Well, why should we be treated any differently, just because we have different limitations? If these realisations anger and annoy you then here comes the tricky part, the part that I struggle with very regularly. Trying to channel these feelings into mature but stern and productive actions in expressing these feelings to your NDIS Providers and support workers. This is the moment which I encourage you to seek support from your trusted circle while remembering your rights.

This brings me to my second area of focus. This is managing your individualised NDIS Supports to enhance your rights to your control. Personally, I feel that this again leads to finding a real balance between respecting your support workers and ensuring you maintain your control and right to choose your individuality. I have been self managing my own care team for about ten years now and it has taken me this long to realise two things. The first is to select the support workers who would do anything to raise you up and make your life better instead of relying on you to fix them and their problems. My second piece of advice is to set up stern boundaries of your expectations for your support workers. From my experience these boundaries are extremely crucial to keep us mentally, emotionally, spiritually and even physically healthy and most importantly safe.

This brings me to my last and final point which is ensuring control within your social life. It is here where those boundaries really need to be in place. This is not only for managing your support workers it’s for everyone else that you come into contact with, including your family. I feel it’s crucial to have this same balance of control and openness whenever you have contact with anyone in public. For example, sometimes it’s fine to joke around with people, if the jokes are equal, but I would have in the back of your head to watch out for when things become disjointed, so that the other person is harshly criticising your personality, dreams and aspirations, saying stuff that they wouldn’t say to anyone else. When this happens you may need to assess this relationship and talk to another person who treats and respects you like anyone else. Remembering that you deserve the same respect and treatment exactly like everyone else.

So, as you just read, the word ‘control’ is very important in the world of disability. I feel that the reasons why this is so important to us is because it’s expected that we lack control in every aspect of our lives, not just in terms of our disabilities. So, I encourage you to try to think of ways to assert your control and individuality in as much of your lives as possible, because remember we all deserve equal individuality and respect.