‘Is this a special facility?’: From rest homes to real homes for all disabled people

With only approximately 2% of housing stock in Aotearoa deemed accessible, some young disabled people are being forced to live in rest homes and inaccessible emergency accommodation. Henrietta Bollinger argues that we should not accept this as the status quo.

I am sitting on the edge of my bed. My flatmate Stace leans into me, to stop me falling sideways. Both our bodies are naturally off-centre in a way that complements each other supportively.

The friendly, professionally-concerned paramedic is crouched in front of me taking notes on a device and double checking that ‘yes, this has happened before. No, I don’t think I’m injured. I understand that I am declining to go to the hospital against medical advice. Yes, I believe I was this degree of disabled before I fell out of bed and before my flatmate and support worker attempted to unsuccessfully lift me back in.’

“Damn,” I say aloud to Stace. “No, ACC for me, oh well.”

The paramedic looks at both of our slanting selves and then around the room: at my two wheelchairs, washbasket, cat bed and pictures of disabled people - both friend and fiction - pinned on my walls. 

“So, is this a special facility?” he asks earnestly.

I am not at my boldest after the morning’s events so I just mutter my retort to myself: “No, it's a commune.”

As soon as Stace, our friend Erin, and I moved in together there seemed to be some excitement about it. The decision was personal, purposeful and pragmatic. One: We liked each other. Two: Stace needed a step-free place. Three: Erin wanted the basic ability to shower in their own house, which they couldn’t do at the time. And four: Thanks to my family, I had two rooms for rent.

Sure, we were excited about it. But so were other people. Disabled activists in Wellington  wanted to be invited over to plot change at our kitchen table. Some other disabled friends worried for us about who would reach the high shelves. OTs and physios got Erin and I mixed up. In Auckland, a friend of Stace’s heard the myth of our Wellington flat from an awed young disabled person and thought: I know them!

The late, great disability rights advocate Sir Robert Martin said that “choosing with whom and where I live" was one of the key rights for disabled people around the world. Having grown up in institutions and advocated for them to be closed down, he believed that real homes were more than the material they were made of.

My mates and I just wanted a comfortable flat with people to rant and laugh and drink tea with, but we knew that living together on our own terms symbolised more than that. The good feelings I have about this time are always mixed in with the anger of knowing how rare it is for disabled people to have real housing options - that figuring it out always seems to come down to “love and luck”.

Even when disabled people have input into housing solutions - like the recent development of Rowan apartments in Hawke’s Bay - they are uncomfortable to celebrate. The word ‘home’ sits too close for comfort to words like ‘special facility’ in our shared understanding of what good lives look like.

More than 800 disabled people under the age of 65 currently live in rest home care. They cannot access appropriate housing and disability support and this is a survival measure; just getting some kind of roof over their heads. 

I want to be warmed by the advocacy of the Aged Care Association CEO Tracey Martin who has said young disabled people were losing out. She rightly pointed out these arrangements are financially unsustainable after Government funding freezes. She recently called for adequate funding from Te Whatu Ora to ensure appropriate support for both disabled and older people.

But her legacy for disabled people is not this one. During her tenure in Government she “secured the future” of specialist residential school Salisbury. This was a divisive and expensive move that while celebrated by the families of some residents took us further away from realising inclusive education and communities for all disabled people. 

For disabled community advocates it reinforces an idea that there are imagined limits to the full inclusion of disabled people in a non-disabled world. Some of us are too much work: too expensive, too difficult to include, too hard to give real choice. So investments are instead made in keeping us apart from the community because it is the ‘only option’ on the immediate horizon. Salisbury is just one example of this - a choice it seems parents felt pushed towards  by a lack of social support. This is not a criticism of individual families but to point out that the same structural failings come into play for us again and again. We seem to be good at inclusion but only in bite-sized chunks.

Many of us will have breathed a sigh of relief at the imminent return of flexibility to the funding that enables independent lives. Alongside accessible housing it means we can be ‘part and parcel of our communities’ as Robert would also say. Though it signals a return of some vital minimums for some of us it hardly extends the ‘good life’, choice and control to us all. Many of us are in group homes, in Oranga Tamariki, hospital wards, mental health facilities, the justice system too, or simply living with and relying on our families longer than we want to be. Greater investment in disability support, the widening of eligibility and real investment in housing infrastructure, underpinned by enforceable accessibility legislation could keep us in our homes or give us homes to choose from. 

The surprised and excited response I get to having lived with like-minded disabled mates by choice suggests to me that the institutional attitude towards disabled people still persists. The defeatist question: But where do we put them? 

As disabled people we all get years of practice clapping back at people’s low expectations for our lives. I have learned to enjoy laughing and raging at non-disabled assumptions and I have had the privilege of doing a lot of this at my kitchen table… And then like… he asked… is this a special facility?! Hahaha.

But what I want for disabled people is a step beyond this. The comfort of all of us living how, where and with whom we choose. This being unremarkable and real for us all.

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