A woman with ALS finds that a little self-advocacy goes a long way
I live in Tempe, Ariz., a lovely suburb of Phoenix. Two years ago, when I determined that it was no longer safe for me to drive due to the progression of my ALS (amyotrophic lateral sclerosis), I began to look for alternatives to depending on my husband, Phil, to drive me.
First obstacle: Getting out of the house. OK, not a big problem. Phil made ramps for the front and back doors to accommodate my power wheelchair. That was the easy part. I got out my front door and down my driveway — only to find that the sidewalks in our neighborhood don’t have the usual 45-degree curbs with ramps at the driveways. Instead there is one continuous “rolled curb” that extends across all the driveways. The angle of the rolled curb is pretty steep and when I tried to get from the sidewalk to the street and back, I would lose my balance, almost tipping my chair on several occasions.
If I was going to be independent, I would have to find a better way.
I did some searching online, called the city, got referred to several different departments and finally found a gentleman who knew immediately what I needed — cut-out ramps. Yes! He said the city had done that for another woman a few months ago and he would look into it. His answer came back the next day: The people who do this type of work are backed up and it could take six months or more.
Then he surprised me. Off the record, he suggested that I send an email to the mayor of Tempe and the city council explaining that this was a matter of “health and safety” for me. I did that.
That same day I received replies from four council members saying they would look into the matter. The next day I received an email from the person in charge of this type of work, saying that they were holding a special meeting and that the Supervisor of Minor Cement (really?) would visit my home to look over the situation and that they may be able to get it done in two weeks. I also was told that the ramp could not be put in front of my house, only at the corner.
The next day, Jim (Supervisor of Minor Cement) showed up and asked if I wanted a ramp in front of my house. I said I was told that couldn’t be done. He smiled and said he was the supervisor and he could put the ramp wherever I needed it. He also said he would put one across the street, one on the opposite corner and two up the road, so that I could have access from my house to the main road, where I could catch the bus.
This was on a Thursday; Jim said they would be there next Tuesday to start work. Instead, a crew arrived at 7 a.m. Monday, putting in a total of five ramps by 2 p.m. How’s that for service?
I have since learned that Tempe was the first city in Arizona to hire a dedicated “ADA and Accessibility Specialist.” Many cities have an ADA budget for just this type of thing. They don’t make it known or easy to find, and you may have to dig a little, but help is available.
Keep making phone calls and searching online. Try your city’s website and look for something like “street or sidewalk repair.” Do a Web search of your city’s name and “accessibility” or “ADA specialist.” If nothing comes up, play around with the wording a bit. Be patient and don’t give up! Eventually you will find the right person.
So now, every week or so, I take myself and my wheelchair out for a spin. I go to the nail salon down the street or the pizza shop or sometimes to the mall, via bus.
These small but independent journeys help to keep my spirits high and allow me the freedom to interact independently in my community.
Bonnie Guzelf, 59, lives in Tempe, Ariz., with her husband, Phil, and cockapoo, Max. A former engineering administrator at TRW Vehicle Safety Systems, she now blogs about her experiences as a wheelchair user at wheelchairaztravel.blogspot.com.