My brother’s supportive housemates have been a life-changer and life-enabler for him. He has lived with an amazing array of people without disabilities for 16 years now. This is something we never thought possible.
Yep we were trapped, as many families are, in burden-thinking.
Taking the leap into this unknown territory has been one of the most liberating things we have done and THE way that we are ridding ourselves of this kind of thinking.
His supportive housemates have provided support and companionship and so much more, in exchange for reduced rent.
We are searching at the moment for someone new and I realise we have much to share. The joys, the characters along the way and finding the methods that work.
This experience is becoming even more pertinent with small but exciting government changes now enabling people to apply for resources which help them move into their own home .
My brother spent pretty much all of his childhood in group homes and hostels. This is a much bigger story to tell, suffice to say that it is a wounding experience he and my family still carry. Abused, languishing and lonely, there was not a single person present to celebrate his 18th birthday apart from us. Something had to change.
On reflection, the most important part of this early stage of change was just running with the pure belief even though we had no personal evidence or experience that it would work. We just held to the idea that other people had done it. Other leaders were telling us it could happen. I would walk around suburbs and stand in front of what I thought were beautiful homes (not necessarily the grandest) and just imagine Matthew in one of them. I put myself in the way of stories of amazing people like Shawntell Strully.
Matthew doesn’t speak and he needs help in every aspect of his life. And I mean every. An early experience of his vulnerability was going on a bushwalk with him. I was always adventurous with him and pushed him up over some rocks piled together. He got his leg jammed down one. I knew I had to leave him to go get help. As I was running home I realised that he would do nothing to help himself – he wouldn’t call out, he wouldn’t try and budge his leg. He’d just stay there until goodness knows what.
We really had little foundation to build upon. He had no friends without disabilities, no job, no other roles and we had no money to make things happen. In fact we had nothing that demonstrated such an inclusive approach would work for him.
Stretching into the light
When Math moved from the group home, he moved into a gorgeous little house in Eastwood, Sydney, we didn’t know anyone who could be his supportive housemate and we weren’t ready to advertise for strangers.
So in the early days my younger brother and I lived with Matthew ……
My younger brother and I argued a lot and really really disliked each other’s habits. I remember vacuuming at about midnight one night just outside his room to annoy him and to demonstrate how important cleaning is goddammit! That was the end of that little experiment in sibling comraderie. But we also had great times. We so relished Math having his own home. We had parties and I’m proud to say that they were so much fun the police sometimes even got an invite!
Matthew’s first small business attempt happened here. We created a bulk organic food-buying group and his home was the base of the group. We would gather and distribute the food and eat and generally have fun together. I loved living with him because it was close to my university and close to friends from university and I just so loved seeing him thrive and develop so quickly. I was living with him the first time he looked at himself in the mirror and smiled! What a moment.
Light-bearers: Math’s supportive housemates
Eventually we had built enough opportunity for Math to meet people through our own networks.
One day my mum and I were chatting with a great friend of mine about looking for housemates. I remember it so vividly. My friend said that she and her partner were looking for a place to live and thought they would like to give it a go. Well my arm literally slipped off the kitchen-island and I almost fell flat on my face.
Bingo – we were making it happen. From pure belief.
But also here is another insight – nobody has nothing. We say we built from nothing. But we had ideas, belief, courage, and others beside us. With these resources extraordinary things are possible. In fact they come before the money. Money doesn’t bring these. Money can only assist these ideas take shape.
So these were Math’s first real housemates and we owe them such a debt of gratitude because their action made it real. And they proved that people without disabilities who aren’t family, can live with a person who doesn’t speak and who has many challenging attributes.
Julie and Math devoured sport together. Adey and Sheree bought their dogs – oh the joy that this brought. So much so that we market to people who have pets now because we know how hard it is to find a place with a pet. And Math LOVES them. Alex and Daniel and their daughter brought the experience of a young family. I remember him patting Alex’s pregnant belly. It’s incredible to me that he understood this entirely complex concept. Daniel also helped Math start his first micro-business.
Daniel discovered his passion in life while living there; cultivating and growing native orchids. He decided to sell them at markets. He invited Math to be his partner. Another jaw-dropping moment. We built a shade-house. Math learned to pot orchids with support. I didn’t think he had it in him to stay on task for something like this. Daniel would get up early and go to markets. Math came along later and would bring new supplies and help man the stall.
I remember supporting Math one day at a market. I set up a chair at the back of the stall-tent in the shade. Math refused to sit there. He walked round the front of his stall and sat in a chair right there! The customers just had to deal with his (strange-to-them) noises and movements. It is hard to shake burden-thinking.
Our new adventure at the moment is to create a different role for the supportive housemate. We’re experimenting with having them much more involved in Math’s day-to-day life and home-making. We want to create a firmer partnership between Math and his housemate, like the core unit. It’s a subtle but potentially life-changing shift again for him. At 41, like many of us, we’re looking to establish more permanency.
- The right person is out there. People without disabilities do want to live with a person with significant disability.
- It typically takes longer to find such a person.
- You need to spend time on crafting the role of the supportive housemate. What is it you are actually wanting them to do?
- Building networks and using networks is a strong foundation for finding the right person.
- But people can also come through advertising. We use Gumtree and Easyroommate. We gave up newspaper advertising long ago. Most people look online now for a house-sharing arrangement.
- We always state what the benefit is to the supportive housemate. This is asset-based thinking. Why is this a great deal for someone? Doing this is a great counter to the incessant creep of burden-thinking.
- We state upfront that Matthew has an intellectual disability. We craft the ad in first person even though he can’t speak or write. The reasons for NOT advertising disability are equally compelling. There is no right or wrong way.
- Spending time before committing, meeting and talking with potential housemates. We have a 3 step process that seems to have worked quite well. Each stage is designed for people to self-select in or out.
- Pay attention to relationship all the time. Pay attention to good communication. We have made many mistakes in this area. We have lost sight of the perspectives of housemates many times and faced the impact of this. It can be of benefit having a non-family member be the main communication line with the housemate.
- Trial periods are good. No commitment time-frame to see how things are on both sides and adjust things accordingly.