Isolation

We feel trapped in our homes, unable to go out to connect with friends or grab a bite to eat at any number of restaurants. We’re secluded, shut off from our communities, fearful this won’t end.

I’m not talking about the pandemic; I’m talking for the millions of people living with disabilities and the elderly who always feel isolation. We’re each experiencing a glimpse of what many live with every day.

During this global crisis, resist falling into an every-man-for-himself mentality. This is a time to look out for your neighbors, near and far. Protect the most vulnerable, put their needs first.

When this catastrophic event is behind us, be changed. Make the world a better place for people you’ve never met. Through the trials of the coming weeks or perhaps months, please realize that the temporary isolation and anxiety you’ve experienced is a permanent existence for others.

For now, isolation is inclusive.

We need inclusive communities now

26% of us live with disabilities. Do you?

Let’s start with the numbers. According to the Centers for Disease Control, 26 percent of us live with one or more disabilities, the most common being mobility impairments. Nearly 14 percent of us are unable or would have great difficulty walking any distance or climbing steps. That’s over 46 million Americans. The United States, and the entire world for that matter, is experiencing an unprecedented demographic shift. We’re aging dramatically and in a few short years, the old will outnumber the young. Baby boomers will all be over 65 and will outnumber those eighteen and under. The good news is that we’re healthier and will live longer than the generations before us. But that’s a double-edged sword — longevity doesn’t mean we’ll remain nimble and able-bodied. As our population ages, the number of us with mobility impairments will escalate and have profound implications for our communities.

No place like home

The social issues of living with a disability are obvious but that never keeps me from talking about them. Most of us don’t want age or impairments to force us out of our homes. Most people would prefer not to move into a senior living facility, but staying at home can lead to social isolation, loneliness and depression. Physical impairments can make it challenging to venture out; many people decide that it’s safer to stay home. That’s the easy course to take and it becomes a hard habit to break. I speak from experience as I’ve used a walker, and now I use a wheelchair.

But if you go…

Moving to a senior living facility can lead to age-based segregation and a loss of autonomy. For me, my home is my identity. It’s mine and it’s where I feel a sense of belonging. It’s filled with my memories and my history. All of that is painful to relinquish. Senior living facilities offer safety, socialization and peace of mind. Many provide everything anyone could need without ever having to leave, and that’s another double-edged sword. Never having to set foot in the surrounding community is not necessarily good for the individual and it certainly isn’t good for the community, which could benefit from the demographic diversity and the economic impact.

Follow the money

Speaking of the economic impact, let’s look at who has money. Adults over 50 own more than three-fourths of the nation’s financial wealth, have incomes 26 percent higher than the national average and spend more than one trillion dollars each year on goods and services. If seniors don’t feel welcome and invited to participate in their neighborhoods, the local communities will suffer financial repercussions from the loss of this essential consumer group. Extrapolated out over a decade, the economic impact will be huge.

Better communities

Besides the somewhat obvious social, emotional and physical benefits for the person aging and/or living with impairments, communities benefit from diversity. Studies have shown that children who have participated in multigenerational daycare programs have much more favorable opinions of older adults. The same is true for children who are exposed to people with any type of disability. Young people who grow up aware of people’s differences and different abilities are more likely to be accepting of age differences and behaviors as adults. Diversity — when differences including race, ethnicity, religion, gender, economic, age and ability are all represented — makes our communities richer.

Class is in session…

The first thing a good architect has to have is the ability to put themselves in other people’s shoes, to value both the physical and emotional needs of the people who’ll experience a building or space. That’s me, I thought. With a primary career specialty in healthcare design, I saw myself as an incredibly sensitive and empathetic individual and architect. Before engaging on a unique clinical assignment, I often spent nights in facilities, sometimes pretending to be a patient, badly in need of rest, other times shadowing staff to see what challenges they faced and what obstacles were in their way. When it came to folks with disabilities, I figured the ADA and the various accessibility codes told me what they needed, so that part was covered.

Beyond this overinflated self-image as an uber-sensitive architect, I also saw myself someone who could defy the clock. I went about meticulously tallying my weekly running logs and planning epic mountainous hikes, oblivious to the fact that I was already half a century into my life. If aging happened to me, it would be graceful. Then eight years ago, during a long solo hike in the mountains, something didn’t feel quite right. Out of the blue, I was diagnosed with a rare degenerative neuromuscular disease. I found myself in a specialty waiting room at Mass General surrounded by people who struggled to walk and talk. I was about to learn real lessons in accommodating human needs that I couldn’t have begun to comprehend before. I felt like I was in a classroom on day one of a course that I was completely unequipped for, and it scared the hell out of me.

Occasionally we do experience sudden epiphanies. That miraculous moment when something clicks in our brain and a previously blurry understanding suddenly comes into focus. Well, I can’t say that happened for me when it came to accessibility. There was no epiphany, no eureka moment where things became clear. It wouldn’t be a crash course in Disability 101. I’d learn these lessons little by little, kind of like learning a foreign language late in life. Simple things came much harder than I could have expected. Over a few years I went from athletic, to clumsy, then to swallowing my pride and getting a walker and finally to needing a wheelchair. Each phase brought new lessons along with the physical and emotional bruises. Early on I subtly looked for street signs or parking meters to hold before I stepped off a curb. When searching for handholds wasn’t enough, I reluctantly bought a rolling walker. I discovered things I never imaged, such as bracing yourself when reaching for a door, knowing that someone bursting through from the other side could be catastrophic. I fought doors like Don Quixote battled windmills. What appeared inconsequential to others became an epic struggle for me.

Wheelchair lessons

Next came my wheelchair lessons. The first thing I noticed from a wheelchair is that there are two basic types of people: the ones that give you a wide berth, avoiding the slightest eye contact, and the ones that go out of their way to help. Initially I welcomed the first type but once I got my self-consciousness in check, I greatly appreciated the later type. For example, it turns out that most of the things on my grocery list are located on the top shelf. I have a choice, wait for a Good Samaritan or revert to liking Fruit Loops. As much as we all crave total independence, I’ve come to accept that in some circumstances a helping hand is needed, and that the interaction can be gratifying to both parties.

Navigating the world from a sitting position is still something I’m learning. It’s not as easy as I had imagined. Obstacles pop up everywhere and I have to admit the old me was blind to 90% of them. As an architect who relied on the ADA and the other accessibility guides, it’s been eye opening to learn what it means to actually use these features, assuming they weren’t overlooked. I stopped being surprised by the omissions, even at large chain hotels and restaurants. Compliant doesn’t mean easy to use. The tension on a door closer rarely is adjusted properly; chest high bathroom counters make it hard to wash hands but easy to soak shirt sleeves; out-swinging toilet doors without closers are almost impossible to close behind you. That 18” “clear space” requirement on the pull side of the bathroom usually seems like a fine place for someone to place a heavy waste receptacle. I’ve learned how a mouse feels in a have-a-heart trap.

Sadly most view accessibility as simply a legal minefield, so fearful a misstep could mean a lawsuit that it creates an “us versus them” mindset. That mindset is reinforced when people perceive the demands waste space, cost more, and are aesthetically compromised, that is to say, ugly. I’m guilty of feeling that way both before and after my disability, but I know we can do better with care, creativity and reasoning.

Learning is a lifelong experience, and we don’t always get to choose what class we’ll have to take. But we can choose whether we’re going to embrace what we’ve learned and use it. Unlike college calculus, I can see a purpose in what I’m learning, especially as an architect. I’m catching on to what accessibility and inclusive environments are all about. The biggest lesson I’ve learned so far is that we can all do better.