This week has been rough for wheelchair access. One of the resource guides CP NOW (our nonprofit-cpnowfoundation.org) is working on this year is about empowering people to advocate for access in their local communities. With lots of persistence and partnership me and another local advocate, an adult wheelchair user and ADA consultant, are opening lines of communication with business owners and code and city officials. With the cooperation of many different entities we are establishing processes to ensure basic access is provided in our community. It’s tough, and requires a lot of patience and thick skin, but it’s worth it.

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Maya and I at a local civil rights rally

For those of you who may not be familiar with what kinds of problems wheelchair users face when getting out and about each day, here are a few I can share from JUST THIS PAST WEEK (and most occurred yesterday!):

1. While visiting our new orthopedic surgeon who is affiliated with a very large hospital system, we found a parking lot that didn’t have a single handicapped space that was level or had the mandatory access aisles (striped lines). I had to lift Maya out of the car and carry her to her wheelchair at the back of our van.

2. When asked at the same doctor’s office whether we had a current weight on Maya I said “No” and asked if they had a wheelchair accessible scale. The woman said they didn’t and then laughed nervously. Maya told her it wasn’t funny. She is right.

3. Yesterday when I took Maya for her piano lesson we had to park in a private lot in order to try and safely gain access to the sidewalk because there are no designated handicapped spots or curb cuts nearby. Had I not parked in this private lot I would have had to roll her down the street against oncoming traffic, until we came upon a new curb cut on the next block. In this case I still had to push her wheelchair through grass and rocks to cut through to a small space where the city sidewalk began. She told me she was scared as she fell forward in her wheelchair because it got so bumpy.

4. The place where she has her music lesson doesn’t have a bathroom that can accommodate a wheelchair–yikes.

5. Last night we went to dinner at a new restaurant in town where the building has been remodeled and reconstructed. I mention this because new construction access issues are a hot button for me–no excuses. It was our second trip there and we knew they had access issues with parking but were willing to navigate them because Maya really wanted to eat their pizza again. This is the experience that triggered the quote in the title of the blog. When Maya had to use the bathroom (we didn’t use the bathroom the first time we were there), a manager escorted us outside and around to the back entrance of the building. She was humiliated and let him know it. She said, “This is the second and last time we will be coming here!”. The manager hung his head in shame. I was proud of her for speaking up. Me and the restaurant manager spoke privately and he told me he had already called the owner because he was so upset. Needless to say, this restaurant has been added to my list of local access projects and I am working to address variety of access issues they have.

I could provide more examples, some that are very surprising, but I am saving them for a special CP Awareness post this month about access and inclusion. As I have been saying each day on our facebook page, people with CP and other disabilities wish to have fun too. They want to be a part of society and have the same rights and privledges anyone else has. As a society we have the moral and legal (at least in the US) responsibility to ensure people with disabilities can participate in life’s activities as much as possible and have their most basic needs met. I know meeting individualized support needs is sometimes overwhelming (but sometimes it’s really easy too) and can be confusing for institutions and business owners. This is why communication, education and advocacy surrounding access and inclusion issues are vital. Most of the time, Maya and others with physical disabilities are asking for the most basic human rights–like accessing their doctor’s office, using the bathroom, being able to have school and work accommodations etc. Whenever I speak with local city officials, architects or business owners I often say, “Look, I am not asking for anything extraordinary, but for us to be able to park our vehicle, access the front door and have our daughter safely and privately use the bathroom.” “Is that so unreasonable?”. I have yet to have anyone tell me it is.  And I will remind everyone that there are multiple building codes and laws in the US that have been in place for decades that are meant to ensure access (not everyone follows them, even remotely). Believe me if every business would just have accessible parking and accessible bathrooms, we will have made a tremendous step forward in including Maya and others with physical disabilities in our society.

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Michele, CP NOW nonprofit and CP Daily Living blog