What’s At Stake

 

Why work toward universal access? Why not just more “housing for the elderly and disabled”? Here are some stories:


Your cousin in another town has invited you to a family Thanksgiving at his new house. During the drive, you stop at a McDonald’s to use the restroom because you’re not sure whether your cousin’s bathroom will be accessible. When you arrive at the house, your relatives pull you up the three steps. As you tour the house, you politely show enthusiasm for the decor, but what you’re really noticing is that although your wheelchair can enter the bedrooms, there is no way you’ll fit through the bathroom door. Shortly after dinner, you leave because you don’t want to participate in the to-do and embarrassment of being carried into the bathroom. You feel frustrated at having to leave while the family stories and laughter are still in full swing.


You’re twelve. You’re very outgoing, and you’ve made quite a few friends at your middle school; you sit with them at lunch and  basketball games. One day at lunch Sarah bursts out to Kim, “I can’t wait till Friday night!” Kim shoots a guilty look at you. The group gets quiet,  and someone changes the subject.  Later Kim tells you she wanted to invite you to her sleep-over, but she couldn’t because there’s a long, steep flight of steps leading  to her house. Your instincts tell you not to muck up the friendship by making Kim feel worse, so you make a joke and tell her it’s okay, but inside you feel bad. Kim feels bad too, but she doesn’t know what to do or how to talk about it.


Your family has to scrape by to pay the basic bills. Over the years, complications have developed from your diabetes. You had to retire years earlier than you’d planned from your package delivery job, and now you use a wheelchair.  You live with your daughter and her kids. Two months ago, the landlord sold the house and gave notice to your family. With luck your daughter found a nearby house to rent, but there are four steps up to the lowest entrance. You have to adjust to staying in the house all day nearly every day, unable to go into the yard to catch some sun or push down to the nearby shopping center. Local errands you used to run to help your daughter aren’t possible any more. You get depressed with your daughter at work and the kids at school. There is no way your family can afford the $4,500 or more it would cost to add a ramp, and the publicly-funded home modification program you contacted regrets that they have a long waiting list.


You’re in great physical shape because you bike to work and play tennis every chance you get. One day, you get clipped by a car while rollerblading. The day after your hip surgery, the doctor says you can leave the hospital in a few days, and you’ll eventually be as strong and mobile as ever. You’re tremendously relieved. But the doctor’s orders include using a wheelchair for at least six weeks — before  graduating to crutches for another six.  With a sinking feeling, you realize your apartment has steps, but you don’t remember how many, or have a feel for how wide your doors are. A couple of your friends check out your apartment and report there are eight steps and a wheelchair won’t fit through the bathroom door. Even to you, a fairly adventurous person, it doesn’t sound like a safe place to recuperate. The endless tangle of logistics during the next months exhausts you more than your injury does.


As CEO of a company that builds more than fifty homes a year even in the recession, you’re financially comfortable and doing well in all ways. Then your wife develops a tumor on her spine. Although the surgery removes the cancer, your wife now has paraplegia. Before she comes home from the rehab hospital, you spend $20,000 and many stressful hours remodeling your house for access. Within a year, your wife has re-built her life, is driving with hand controls, serving on committees, and being mom to the one child still at home. But here’s whose homes your wife can no longer visit without huge effort on her part and yours: your adult son and his family; your adult daughter and her family; all but one of your siblings and hers; the couple you’ve been best friends with for years; and nearly all of the other friends and relatives in your address book. All this adds up to the most devastating part of the disability. Wincing, you remember that a few years ago you called your city councilperson to help de-rail advocates’ efforts at home access legislation. And you think about what easily could have been done differently in the hundreds of houses your company has built. The company now builds all its new houses with basic access because you do care what happens to people.


Age 84, you live in Fair Meadows and use a walker to get around. You wish you had a   scooter like those you’ve seen on TV, but really there’d be nowhere to go outside the facility, since it’s on the far outskirts of town. After a stroke five years ago, you never returned home. While you were in the rehab hospital, your son came from out of state to stay a while, and he learned it would take at least $20,000 to renovate your home even to a basic, useable level. Under time pressure to make a decision, you both agreed that choosing a contractor, going through major renovations, and spending a lot of money did not make sense. The unspoken possibility that another medical crisis might happen soon was in your minds. In fact, no further medical crisis has occurred. Paying what Medicare didn’t cover for the nursing home, you’ve run through your savings and the profit from selling your house and now are on Medicaid, sharing a small room with a stranger. You realize that if your house had allowed you to move back in a timely way, your savings would have covered many years of help a few hours each day — or you might have offered your spare bedroom to a compatible person in exchange for help — and with Meals on Wheels and a few other community services, you would have made it in your much-loved old neighborhood. Maybe even running around on a scooter.


Inaccessible houses impede the lives of people who use wheelchairs, walkers or are mobility impaired in other ways.  Visiting in an inaccessible house means the danger of falling on entry steps, the worry and embarrassment of being kept from using the bathroom, the social awkwardness of being carried, the frustration of not being able to knock on the door to see if someone’s home.

Inaccessibility makes friendships harder to create and cuts people off from meetings where information is exchanged and decisions made.    Inacessibility causes people with disabilities and their families not to be invited, or to have to turn down invitations.  If they have low incomes, as many disabled people do, inaccessibility often forces them to live in houses where they may literally have to crawl every time they use the bathroom, or stay inside all day because of the steps. Further,  inaccessbility  forces many people into nursing homes.

These are serious matters. And yet . . . . .

  • Most builders do not yet  construct routine access in new houses.
  • Most buyers have not yet begun to demand it.
  • Most policy makers have not yet made it a priority

Work with us to change these realities!