People with disabilities should be included in planning for the “new normal,” not pushed to the side. I remember the toaster my family had when I was growing up. It wasn’t a fancy toaster — two slots, stainless with black trim, and a darkness setting knob that seemed more about form than function. It was a wedding gift to my parents from 1965.
It was a workhorse of an appliance, and I remember it being taken to a repair shop at least a couple of times before I moved away from the homeplace.
Imagine taking a toaster to be repaired in this day and age! It’s cheaper to chuck it and buy a new one. Replace, not repair, is part of the economic principle of planned obsolescence. It’s better for the economy if we keep buying the same products over and over to keep demand up and manufacturing on a steady increase.
Many products are designed to wear out and be replaced rather than be repaired for lifelong use — but people should be a different matter.
Are People With Disabilities Being Made Obsolete?
As I look around at the varied manner in which countries are trying to reopen their economies following closures because of the COVID-19 pandemic, I see many people with multiple sclerosis (MS) feeling as if we’ve been forgotten. It’s like the world is trying to move on without us. It’s like we’ve become obsolete.
Whether it was called “cocooning,” “shielding,” “self-isolating,” or some other term, people with MS and other conditions that may have made us particularly vulnerable to COVID-19 were asked (and we answered) to keep ourselves distant for our own safety and to not add to the burden of overcrowded hospitals.
Things began to look like they were getting better, and then they got worse, and then … well, the whole thing is complicated. But nothing has changed for those of us with MS and other chronic conditions. We may still be vulnerable. We may still have compromised immune systems. We, in many countries, are still being asked to take particular care of ourselves and sharply limit our contact with others.
The world around us is trying to tumble through and find its new normal. It is adjusting to what its citizenry can and cannot do, how it can do those things, and at what pace. But that world is figuring out what normal is going to look like, and we’re still being asked to stay out of the way.
We Want a Seat at the Planning Table
Those of us with chronic illnesses and disabilities have been put at the kids’ table, while the grown-ups have their planning sessions in the dining room. Without a seat at that table, the contributions that we have been working so very hard to still make to our societies will not be considered. We risk becoming obsolete to the way the world will work on the other side of this pandemic.
We could be looking at an unplanned obsolescence from behind the windows of the houses we’ve been asked to spend as much time in as possible.
That means it’s more important than ever that we engage with patient advocacy organizations around the world to ensure that we are not left behind. It wasn’t that long ago that people who were diagnosed with MS were told to quit their jobs, go home, and ready themselves for a wheelchair. Those days are, thankfully, gone but they should not be forgotten.
People with Disabilities Are a Resource, Not a Burden.
We have much to give, we can be active participants in the world, and we should be considered a resource, not a burden. It might be easier to rebuild an economy without considering us, but it is a richer world when we are able to participate in the design, construction, and running of whatever “next” looks like.
I’m not ready to be a toaster headed for the scrap heap just yet.
Wishing you and your family the best of health.