The medical and social models of disability both matter 

For the past four days my wife disappeared.

Not in the relationship sense. She hadn’t finally had enough of living with a decrepit lush!

She voluntarily checked herself into a clinical research unit in Auckland as one of a very small number of people worldwide taking part in the first human trial of a new drug for Hereditary Haemorrhagic Telangiectasia, mercifully shortened to HHT.

If you’ve never heard of HHT, you’re in good company. It’s a rare inherited condition that causes abnormal blood vessels. Frequent nosebleeds are almost universal, but the condition can also lead to serious bleeding, anaemia and complications affecting organs such as the lungs, brain and liver. I remember her father appearing regularly and nonchalantly with a wad of toilet paper the size of a golf ball shoved up his nose. Slowly, turning crimson as it stemmed the arterial flow. No one would bat an eyelid; it had become second nature to her whanau.

This wasn’t a holiday. It was four nights in a clinic, countless blood tests, heart monitoring and questionnaires. She was told what to eat, and when to eat it. She was confined to a bedroom and a lounge. She had cabin fever. She had caffeine withdrawal. She was tormented by the hot and cold extremes of heat pumps, and air conditioning. She was fully aware that because this is a first in-human study, nobody yet knows exactly what the medicine will do. She may even have received a placebo, because that’s how hysterical the research was.
Watching her volunteer got me thinking about a debate that often bubbles away in disability circles: the medical model versus the social model of disability.

The social model has transformed the way many of us think. It argues that people are disabled not simply by their impairment but by inaccessible buildings, inflexible systems and society’s attitudes. As someone involved in disability advocacy, I’ve spent years arguing exactly that. Build an accessible world and many barriers disappear.

But sitting with my wife’s experience reminded me that the medical model also has its place.

No amount of accessible parking, inclusive employment or better attitudes will repair fragile blood vessels. No amount of universal design will stop internal bleeding.

Sometimes people simply need better medicine.

That’s not a failure of the social model. It’s recognising that different problems need different solutions.

It’s a bit like rowing a waka.

The social model is one oar. It helps move society towards inclusion, dignity and equal opportunity.

The medical model is the other. It drives research, treatments and hopefully one day cures.

Try rowing with just one oar and you’ll spend an awful lot of time going in circles.

What impressed me most wasn’t just the science. It was the courage of people who volunteer.

This particular study is only enrolling around 32 participants worldwide in its first phase, with only a handful from New Zealand. Every blood sample, every questionnaire and every sleepless night attached to a heart monitor contributes to knowledge that could eventually improve the lives of thousands of people living with HHT.

There is no guarantee participants will benefit personally. The study information says so quite plainly. It may help, it may not, but it may lead to better treatments in the future.

That’s an extraordinary act of generosity.

As disability advocates, we should never stop challenging society to remove barriers. We should continue demanding accessible transport, education, employment and communities.

But we should also celebrate the scientists, clinicians and participants who are trying to reduce pain, slow disease and improve health.

These don’t have to be competing philosophies.

My wife didn’t spend four days in a research unit because society failed to include her.

She did it because she hopes her moko, who also has HHT, might have a better future than the one she inherited.