One random evening, while scrolling through Instagram, I came across a post with a link to a news story. I clicked on the link and watched the video, which revealed my “social media friend” has a disability. The news story was about Chase, a 26-year-old guy in New Orleans who has Becker Muscular Dystrophy. With the help of a group called Ainsley’s Angels, Chase was able to participate in the Crescent City Classic. He was pushed in the race by a local fireman, who wore full gear during the 10k.
After watching the story several times over a week or so, I reached out to Chase and asked him to meet me to discuss Ainsley’s Angels and how I could help the New Orleans Chapter. Chase agreed and we soon headed out for a coffee. Due to our timing, we actually met up about a half a block down from the venue, so we greeted each other and proceeded to head to our destination. Chase was using his cane and had to maneuver around a bike rack and uneven cement on the sidewalk. This is normally not a problem for most of us, but I couldn’t help but think it must be a challenge for him.
Chase has Becker muscular dystrophy (BMD). “BMD is one of nine types of muscular dystrophy, a group of genetic, degenerative diseases primarily affecting voluntary muscles. BMD’s onset is usually in late childhood or adolescence, and the course is slower and less predictable than that of Duchenne Muscular Dystrophy.” (mda.org)
I asked Chase, “What would you most like to get from this discussion?” And to my surprise, his response was, “to feel heard.” At first, I wasn’t entirely sure of what he meant, but the conversation quickly shifted gears as he elaborated on this statement. Though he met me for coffee using a cane, he often needs to use his wheelchair to get around. He explained that, due to the BMD, he can no longer drive like he used to, and even going out to socialize poses a challenge sometimes.
Chase said that he recently attempted to enter a French Quarter bar but it has a step that he couldn’t get up in his chair. The bartenders saw his struggle, and no one offered to assist him, so he stayed on the sidewalk then eventually left. As he told me this story, I first got angry, and then sad. Most of us are privileged in the fact that we can easily walk into any bar on Bourbon Street and have no issues. We are greeted, many times with a hello or a hug, yet when someone in a wheelchair tried to enter, he was simply stared at.
There are so many things most of us take for granted, such as walking in a French Quarter bar, sitting on a Bourbon Street balcony, enjoying the Pride Parade, or even simply going out for Decadence or Mardi Gras. We take these things for granted because we can maneuver around groups of people, we have become experts at navigating potholes and failing sidewalks, we have no trouble walking into the bathroom, or even squeezing into a spot at the bar. It is nothing for us to trek through the mud at Jazz Fest or Voodoo. However people in Chase’s position sometimes would rather stay home than navigate an inaccessible environment. He says people with disabilities don’t mind doing things in a wheelchair; the difficulty is in contending with environmental factors such as curbs, step ups, etc.
People with disabilities are often looked upon with trepidation, and some people are not sure how to approach a person using a wheelchair or other accessibility device. People in the disability community want to be looked at like any other person, abled-bodied or not; and like any other person, they want to be afforded the same social courtesies, the same happy greetings and hugs. Let’s face it, we are all selfish and mainly think about ourselves.
Chase began to talk about the Pride Parade, how he once enjoyed attending it, but is less likely to go because people will ignore that there’s a person with a wheelchair who can’t see the parade if someone is standing in front of them. He cited that it also doesn’t help that the French Quarter streets and sidewalks are difficult to navigate in a wheelchair. This year, the New Orleans Pride Parade has two designated spaces for people with disabilities: 2110 Royal St., around the Christopher Inn Apartments, is a great spot to catch the parade early. Or head over to 400 N. Rampart St. to the “Safe Space” provided by the Metropolitan Human Services District at St. Jude’s Community Center.
This brought us back to the reason I wanted to meet with Chase. His face would light up every time he talked about Ainsley’s Angels, a national organization that helps people with disabilities participate in endurance events. In 2003, Ainsley, was diagnosed with Infantile Neuroaxonal Dystrophy (INAD) just before turning four years of age. INAD is an extremely rare terminal illness that slowly causes global paralysis. In 2008, Ainsley went for her first jog during a local road race, where she gave a radiant wind-induced smile that anyone would envy. In an instant, running provided the family with a therapeutic means to fight the devastation associated with trying to live with the fact that Ainsley had a terminal illness. Ainsley passed away in February of 2016.
Ainsley’s Angels mission states, “In addition to ensuring everyone can experience endurance events, Ainsley’s Angels of America aims to build awareness about America’s special needs community through inclusion in all aspects of life, by promoting awareness, providing education, and participating as active members in local communities.” Founders Kim Rossiter and his wife Lori are from Lake Charles, Louisiana.
Chase told me stories about the inclusivity of the organization and their LGBT presence, as well as his goals for the New Orleans Chapter. Chase has a goal of officially being a part of an upcoming 2019 road race in New Orleans, and this is where he needs your help. Unfortunately, the wheelchairs are expensive and Chase needs nearly $1,000 to $8000 per chair. These are chairs that are specially made for road races. They are designed to be lightweight for the runner while still being comfortable for the person in the chair.
If you take nothing else from this article, I hope that next time you see someone with a disability, you are a little more mindful of their needs so they can be awarded the same pleasures you are experiencing. For more information on Ainsley’s Angels, their need for wheelchairs, or to make a tax-deductible donation, visit ainsleysangels.org or www.crowdrise.com/aainneworleans for the New Orleans based page.
According to ldh.la.gov, In Orleans Parish, it is estimated that 102,122 people ages 5 and older have a disability. That averages 23 percent of the Orleans Parish population. Under the Americans for Disabilities Act (ADA), “a person with a disability is someone with a physical or mental impairment which substantially limits one or more activities of daily living (ADL), or someone with a history of such impairment.” People with disabilities tend to socialize less, participate in fewer community activities, and are less likely to be employed.