You are told not to leave your home. No one can visit. Food supplies may be limited. You are waiting for authorities to tell you when you can enjoy your freedom again.
Long before the COVID-19 pandemic, this was the daily reality for many people with disabilities living in institutions and mental hospitals across the world. Many of us now are getting a glimpse of what it can be like to live under such restrictions.
With countries just now beginning to ease lockdowns put in place to stop the spread of the coronavirus, we can now better empathize with what it’s like to be cooped up in one place and what that can do to our mental and physical health. Our lockdown is temporary, but imagine what it must be like if this were the norm: living in isolation, deprived of friends and freedom, not just for weeks, but for years, and in many cases until you die.
In recent weeks, I’ve been thinking a lot about people I’ve met when I visited closed facilities over the years. The young boy with Down Syndrome and a broad smile, who was abandoned as a baby at an overcrowded institution warehousing more than 1,000 men, women and children with disabilities in New Delhi, India. Or the young man trapped in a psychiatric hospital in Croatia for years because his family wouldn’t take him home. Or the woman with a mental health condition whose ankle was chained to a cement floor at a spiritual “healing” center in Ghana.
It has taken a global pandemic to give the public something that years of advocacy never could: an urgent and unflinching sense of what living in isolation and, for some, under harsh restrictions is really like.
Even for those in privately-run facilities, no amount of expensive care and well-meaning therapies can make up for the loneliness that comes from living in a locked facility. The social isolation that people suffer can fuel anxiety, depression, poor sleep and a decline in immunity.
It’s not only inside institutions where people with disabilities are locked up. Take the parents I met in Nepal who felt they had no choice but to lock up their 12-year-old son, who has a developmental disability and was shunned from school, so that they could work in the fields. He was allowed to leave his room just once a day to get some fresh air. My colleagues and I have met scores of people with mental health conditions who have been confined in back rooms, basements or even goat sheds completely alone, in many cases held down by chains. One woman in Indonesia was locked in a shed for more than 15 years.
We should use this new awareness to fundamentally rethink why it’s acceptable that people with disabilities, including people with mental health conditions, are forced to live this way.
One key reason for the status quo — in addition to stigma and discrimination — is that we just haven’t built up the services needed to support people with a disability to live independently. The services that do exist are mostly centered in residential institutions and hospitals. We need to seize this opportunity to shift from institutionalization to robust support networks at the community level. Many groups, including organizations run by people with disabilities, have been pushing for community-based services such as peer support programs, emergency advice helplines for people going through a mental health crisis, and online psychosocial support. Let’s listen to them. This is where governments need to invest.
This means that governments must deliver more than just medical or psychological help. For most of us living through this lockdown, life quickly became more stressful as we struggled to do basic things such as buying food, paying bills, getting medication or keeping a job. For people with certain disabilities, getting daily practical support is essential. Innovative programs, such as one in Brussels, are doing just this and could be a model for other countries on how to empower and support people with mental health conditions without resorting to force or institutionalization.
Transforming mental health care and institutions is no easy task, especially with the world’s resources fully stretched in response to the COVID-19 crisis. But this pandemic is not just a health emergency; it's also an opportunity to develop a system of support services that work better for people with disabilities and respect their rights. Now that we’ve caught a glimpse of what it’s like to be locked up, we surely can’t let people with disabilities continue to live in a permanent state of lockdown.