In April, we decided that we needed to move and move soon. A series of problems with our living arrangements came to a head and, like many things in life, it prompted us to do something we had hoped to put off for a while longer. When you live with chronic pain and illness, sudden changes, especially ones that require physical labor, do not come easy. So the past two months have been frantic and disruptive and stressful.

Pattie on her scooter entering our apartment

But with change often come unexpected delights. This move turned out to be such an event. Once motivated, we found a place that was larger, more modern and not that much more money out of the monthly budget. And, we found a place that was accessible. Yep, Pattie can now scoot in our front door.

Concrete Change is an organization that has been promoting the idea of visitable housing since before the Americans with Disabilities Act (ADA) was passed in July 1990. They are promoting a simple concept: “it’s not just unwise, but unacceptable that new homes continue to be built with gross barriers — given how easy it is to build basic access in the great majority of new homes, and given the harsh effects major barriers have on so many people’s lives. These easily-avoided barriers cause daily drudgery, unsafe living conditions, social isolation, and forced institutionalization.”

To do this requires three basic changes in the way homes are designed (from their website):

  • At least one zero-step entrance approached by an accessible route on a firm surface no steeper than 1:12, proceeding from a driveway or public sidewalk
  • Wide passage doors
  • At least a half bath/powder room on the main floor

Our new apartment meets these standards, and the effects are already noticeable. Pattie has been able to contribute to household chores more fully since moving here. She can pick up mail, take out trash  and carry in groceries by scooting. She can vacuum floors from her scooter as well. This not only makes it easier for Pattie, it helps Carl as well. The more the two of us can share tasks, the easier it is to negotiate the “who’s having a bad day, who’s having a good day” rotation between the sick role and the caregiver role.

Along with accessibility, we now have much more space, more than twice what we had before. We learned to live in a small space when we traveled for a year in an RV.  There are advantages for a PWD to smaller spaces because upkeep is easier in some ways. But we discovered that taking the same amount of stuff and putting it in a bigger place has an advantage we didn’t anticipate. It actually takes us less time to clean the new place. Our working theory is that it is because you don’t have to have everything in its place the way you do when you have organized a small space. Of course, it will take some discipline on our part not to fill the space up. Somehow in our consumption culture, we follow the law of physics that says molecules will expand to fill the space of their container. Having lived without a lot of stuff for  eight years now, we appreciate the open space and don’t plan to fill it any time soon.

Finally, the move from substandard housing (a 40-year-old house that had no appliances, poor ventilation, a kitchenette and bad electricity) to a modern apartment with washer/dryer, dishwasher, garbage disposal and central air and heat that is well ventilated has been most revealing. Frankly, we can’t believe how bad it was at the other place and how willing we were to adapt. We are extremely appreciative of the privilege of access to these appliances and good electricity to run everything. The old place had so many power surges that we put triple power surge protectors on all our major equipment and still lost about $500 worth of stuff over the  five years we were there. It is nice to be able to trust the electricity again.

As people with disabilities, we also appreciate the independence these appliances are providing. We are eating at home more and enjoying being at home more and feel like we are able to manage homemaking tasks with much more ease and reserve energy for more important tasks.

 Empathize, Define, Ideate, Prototype, Test

Empathy is the first step

These are simple things. But they are important to point out because these things existed in the minds of a designer before they became a reality in space and time. Designers need to understand how users will use the design. This requires empathy. A designer has to put herself or himself into the place of the user and see how they will use the design in their everyday lives. Empathy is so important to design that it is the first step in Stanford’s Institute of Design’s iterative methodology model.

Universal design is social empathy in action. It asks of the designer to consider as many people as possible and to include their view of the world in the design.

Social empathy is something that seems to be natural to human beings. From an evolutionary perspective, this makes sense. We need as a species to empathize with pre-verbal babies in order to figure out what they need and provide it for them so they will grow into productive adults. But social empathy has considerably more uses, and successful designing is one such area.

Social stigma is a breakdown of social empathy. Instead of seeing the world through the eyes of the other, a person who stigmatizes has imposed their own view onto the social identity (how they view the other person) of the other. Social empathy is the cure for social stigma. Joey Aquino’s summary of Stanford’s model (linked above) includes three ways to achieve empathy:

  1. Immerse
  2. Observe
  3. Engage

The last one is probably the one that is least utilized and the one that stigma prevents. Simply asking people to describe the world from their point of view and then really listening to their answers. This requires an honoring of the experience of someone who is generally regarded as something less than human due to the stigma.

design tools held in a heart and hands

Our new place still suffers from poor design (for example, it still has a kitchen that seems to have been built for NBA players – only a six-and-a-half-foot tall person would be able to utilize the shelving fully), but in many ways it was built for a broader range of physical ability than many places have been. As sufferers who live with pain and fatigue, not to mention mobility issues, we are grateful that someone, somewhere had the forethought to create a space that works for us. We cannot help but wonder if the world would and could be a better place if social empathy were the guiding principle for most design and, indeed, for most human interactions.

About the Authors

Carl Wilkerson, M.B.A.

Carl Wilkerson, M.B.A. is an artist, author, mathematician and business analyst who has lived with a chronic illness for the past three years.

Pattie Thomas, Ph.D.
Pattie Thomas, Ph.D., is a medical sociologist and author of Taking Up Space: How Eating Well and Exercising Regularly Changed My Life, a sociological memoir.

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