I’ve been documenting my journey with my broken foot. It’s been frustrating, painful, and difficult to say the least. Non-weight bearing is hard when you don’t have autoimmune arthritis, but when you do, it’s nearly overwhelming. When I found out my foot hadn’t healed, I decided to stay at my parents’ house over the Christmas holidays. They have home with bedrooms and bathrooms on the main floor. I figured I would walk less on my broken foot in a situation without stairs. I was wrong. My elderly parents are wonderful but also physically limited. When I asked if I could move some things to make room for my scooter, my parents looked at me like I was nuts. My mom worried about cleaning the spots where objects were removed from, and my dad worried about stressing out my mom. So I dropped it and everything remained where it is and I found myself walking more than scootering because it’s just easier for them. The last thing I want is to stress out my parents. It took a toll on me physically, but I kept moving things out of my way and putting them back on a regular basis. Over the course of a week, I began noticing more and more how people take mobility for granted.
At one point, I used the scooter to take the dog out. Now to do this, I need to go straight out, the door to the banister, then back up to make a turn once the storm door closes then stroll to the end of the porch to get the dog into the yard. It’s far from easy or convenient. One day my uncle was behind me as I attempted to take Georgia outside. He left me no room to back up and then looked at me like I was crazy when I asked him to move. It reminded me of the mammogram lady who couldn’t fathom that she had to move for me to adjust the scooter. It’s honestly like the scooter is a novelty to people until it inconveniences them. The scooter is so much easier in some ways anyway more difficult in other ways. The main difficulty is the general public’s inability to comprehend its use. I work with people who use wheelchairs, so I am used to making accommodations without even thinking about it. I have to realize that other people don’t instinctively work that way.
Crutches are just as bad. I did get together with friends. I chose to use my crutches because their home has steps. They live on a hill. Managing crutches on a slope with uneven pavement is not pleasant, but I managed. A few days later we met up again at a restaurant. I wanted to ask if the place was handicap accessible and if there was a parking lot, but a family issue popped up and I never got to it. When I arrived at the restaurant there was no close parking and I had to park a block away. There were 3 narrow steps to get in and our table was at the furthest point in the building from the bathroom. I managed it all and a friend retrieved my car when it was time to go, but I still spent the entire next day in bed because my fibromyalgia and sore arm joints were rebelling from all the crutch use the day before. I had fun, but paid the price for it.
I also had a run-in with a man at a local coffee shop. I pulled into the lot and noticed a man parked on the blue lines (for handicapped van access), and making the handicapped spot a tight fit for my car. I pulled in to the handicapped spot (with my valid placard) essentially blocking him in. He gave me a threatening look until he saw me with my crutches hobbling in to the building. I turned to him and said, “That is not a parking spot”. His response was “There was no one else to park”…. uh…that isn’t my problem, but it becomes my problem when people take it upon themselves to block handicapped parking for their convenience. People with disabilities need the convenience of parking closer. Getting in and out of cars can be painful, cumbersome and stressful for someone with a disability. None of us asked for this. The only thing we ask for is for the general public to respect handicapped spots. It may not be easy or convenient to always do the right thing, BUT IT IS ALWAYS RIGHT.
Mobility is something that I will never take for granted again. As hard as it been for me during my temporary situation, I know it’s even more difficult for people who must use mobility devices regularly. I spoke with one of my students about it. He uses a motorized wheelchair daily. He agreed that people think they are helpful when they are actually being unhelpful and that many people make assumptions about him just because he is in a chair. Another friend, and fellow patient advocate, Charis Hill (Being Charis) documented a conversation she recently had with a someone who ridiculed a wheelchair user for getting out of their chair to get it up a hill. Completely not understanding that some people who utilize wheelchairs CAN walk but it’s extremely painful for them TO walk. This is a huge issue. Abled people are very quick to judge the abilities of people who don’t “look disabled to them”, or fit the antiquated image they have in their mind. Her response to this person was perfect:
“Now, I’m not saying there aren’t people who pretend to be disabled, and I agree there are people who cause harm to my community by pretending. What I’m saying is how much harm has been done to my community by the perception that there’s only one way to be disabled.” -Charis Hill
I couldn’t have said it better myself. I go through periods when I must use a wheelchair, cane, or crutches to to get around. I don’t need them all the time. Pain and autoimmune disease are nasty and debilitating. To get through airports, malls, or even the grocery store, I sometimes need a aide to walk. I hate it mainly because I know people are judging me….wondering what is “wrong” with me. I’ve been accused of faking it, been ridiculed for using handicapped spots and scooters….basically made to feel bad for having to use mobility devices. Often, I won’t take assistance when it’s available because of this reason. Sadly, there are people who fake disability for various reasons. Those people cause the disabled and chronically ill community so many headaches.
I live in a world that straddles both the abled and disabled. I celebrate with my friends who earn their disability after long fought years. I cringe when I hear my abled friends criticize those they deem are bilking the system and stealing abled people’s “Hard Earned Money” when they get the label of “permanently disabled”. Seriously, do you think those who are actually disabled are joyful over this?? Don’t get me wrong, it’s a relief to many, but no one is happy they are truly disabled. I hear family and friends complain about people getting “free healthcare” and food stamps on their dime. I know people who are permanently disabled and you know what??? They are dirt poor. DIRT poor because they can’t work for a living all because they are the losers of a genetic lottery that gave them a debilitating disease. I know people, who made decent wages when they were among the workforce who have lost everything to their disease and now literally count their pennies just to see if they can get a Starbuck’s coffee once a month. I know a woman who takes in less than $1000 a month. She needs to use that money cover rent, food, bills, medication, doctor appointments, etc. How many of us can cover all of our bills for less than $1000 a month? I can’t! She can only go to doctors on her list and trust me, Medicaid doctors are not the “best” you can see. She had to give up driving because she couldn’t afford a car payment. She got sick and lost everything….yet people ridicule her for bilking the system because she “doesn’t look sick”?? She was a career woman for 35 years who paid into the system now struggles not only financially, but emotionally. Being sick ravages your body, makes you depressed, takes your dignity (at times), and makes you poor….and all the while, the “disability” police ridicule you for parking in a handicapped spot or using a wheelchair once in a while. I have had this discussion with people who are not disabled and they can’t wrap their mind around the issue. Most will say they only get “mad” at people who are faking it. But how do you know the stranger at the grocery store is “faking it?” They also have a hard time believing people with disabilities get attacked verbally on a regular basis as a result of the general belief that most people are “faking it” to get something for free.
Today, my Aunt Ginny shared a photo on facebook. A woman received this nasty note while shopping in Walmart.
Click here to see the full post: http://bit.ly/2QrHAX0
I reached out to the man who shared this image. He gave me permission to share via my blog. I’ve known for a long time how people with legitimate disabilities are harassed for parking in handicapped spots. I see TONS of people without placards parking in these spots without ever getting harassed (except for me harassing that man at Dunkin Donuts)….but tons of people with legitimate health reasons get harassed like this often. I had a man approach me once to tell me I had to move from my parking spot because I was not handicapped. I asked him what constitutes a handicap in his mind and he said, “You don’t use a wheelchair.” In his mind, disability is only real when a person is in a wheelchair. I happily showed him my disability card along with my placard and told him he needed to open his mind. I’m doubtful that he did.
I do have to admit, people are much nicer to me when I use a cane, wheelchair, or a scooter. It’s almost like my disability is validated to the general public that way. There is such a disconnect between abled people and disabled people. I think that is why the term ableist is so popular among people struggling with disability and chronic illness. We as a community struggle with so much, so when we are attacked for our need for things that others take for granted like parking spots, straws, and even food stamps, it’s disheartening. We don’t want to be pitied, we just want to be respected.
There is such a lack of communication between the abled and disabled communities. People who are sick or disabled should not have to defend their need for certain things that are available to them. People who are abled need to realize in their quest to “protect” people with disabilities (from those evil parking spot thieves) that their ignorance does more harm than good. They need to educate themselves on the various reasons that someone may need that spot. You can’t always see a heart condition, cancer, or a neurological disease that requires a person to need handicapped accessibility. You can’t judge the level of pain a person experiences when grocery shopping, so when you see a person in a wheelchair stand up, it’s not that they are faking their condition….they are trying to be independent with a daily living activity. If someone with a mobility devices ask you to move something, just do it! It’s not a big deal!! So stop judging others for not looking sick and needing accommodations and maybe we’ll stop judging you for being A-holes.