A few weeks ago, my cousin – I’ll call him Jay – died. I last saw Jay two years ago at a small family reunion in Finland. I searched through my photos from then to find an image of my parents and aunts crammed into a rocking bench we had found, holding hands with Jay in the middle, all laughing. Writing a condolence card to Jay’s family, I recollected dancing with Jay at my wedding in Germany twenty years ago. Jay was 56 years old when he died, and lived much longer than expected when he was born with Down syndrome.
I’ve thought and also read a lot about people with disabilities these past weeks. I went to school with Ou – or so I’ll call him here – who was for years after graduating still a core member of our cohort and a cherished friend to many of my classmates. When Ou was younger he walked, then walked with crutches, and later used a wheelchair. His friends made sure he was able to join us on a graduation trip, taking over his care. Ou lived decades longer than expected, and our entire class mourned when we heard he had passed. Ou had a form of muscle dystrophy.
Muscle dystrophy (and a form of Duchenne) also affects my own family. My earliest recollection of disability (and death) is that of my cousin – called Ai here – who passed away in the 1980s. Knowing I could also be a carrier of this genetic disorder, I went through a period of research, reflection, and decisions when we decided to have our own children.
Significant disabilities affect 1 in 6 people, according to WHO. We often think of people in wheelchairs with spinal cord injuries, but disabilities also include hearing and sight impairment or loss, mental health challenges, and other factors that do not allow people to engage fully in society, education, work, or life more broadly. Reading a book on disability by Tom Shakespeare, I learned that what in one society, context and time could be perceived a disability (e.g. sight impairment) may through support and health care (e.g. corrective surgery or eyeglasses) not be disabling. This explains why some people prefer to speak about “disabled people” (where society, politics, or economic circumstances are the disabling cause) instead of “people with disabilities”.
The older I get, the more disability I experience around me. This is in part natural, as nearly all old people will at some point have a disability (only a very small percentage of people are born with disabilities; most disabilities develop as people age, or are caused through injuries and trauma). Anyone with aging parents or grandparents will know this firsthand. Several of my friends have disabled children. I’ve seen some of the fears, hopes, strain – and horrendous system failures – even in countries with strong health and social systems such as Germany. And I’ve seen the care and love, and how special these children are – like Dee, who has multiple disabilities and has had more operations in his short life than I can count.
I have written about many inequities before, and how we’re currently experiencing a rolling back of support and rights. Women’s rights, LGTBQI+ rights, refugee rights, and also disability rights and support are under threat in many countries due to austerity measures, and political shifts and catering towards the extreme right. The rights, policies, social and economic support, and supportive care that enabled my cousin Jay to lead a relatively independent, healthy, fulfilling life, or ensured that my classmate Ou could be part of school and higher education and many social facets linked to these, are under threat and are being rolled back.
As the sun shines warmer where I am in Berlin, it’s easier to feel disconnected from what’s happening in the world, or even around us. It’s easy to forget that pivotal elections are coming up that could change the trajectory of this century, and not just in Europe, in the UK, and in the US. It’s easy to continue to assume that historical progress is linear, and just because people faced less discrimination, and received more support, they will magically continue to do so.
At a time where the late Paul Farmer’s statement “human right, who is considered human enough to have that right?” resonates more with me than ever, now is not the time to remain complacent and silent. This affects all of us.
Katri Bertram 