Written By: Anna Giannakouros
How I Really Feel About Disability Pride
July is Disability Pride Month. The first I heard of this movement, I wasn’t sure if it had the best title because honestly, I don’t feel proud to be disabled and it’s not something I ever aspired to be. In fact, having Multiple Sclerosis for the past 12 years, I have done everything in my power not to be disabled and I keep trying to do whatever I can to be “less” physically disabled. If there was an available cure for MS, like many, I would be first in line to take it. If I’m not proud to be disabled does that mean that I am ashamed of being disabled? The answer is, no, but the truth is, there was a time when perhaps I was. Not because anyone told me to be ashamed per say, but because my own belief system was that, compared to my old self, I was now weak, damaged and inferior. Especially facing learning to adapt and function in a world designed for healthy able-bodied people, I felt like I was always at a disadvantage, in an impossible situation. And I was. Disability Pride is embracing my disability and accepting it as a part of a facet of my identity with no negative connotations. I am proud of all that I am, which also includes being disabled. It doesn’t diminish me or my value as a person and in fact, it has made me more capable and empathetic in other ways. I am proud to be a part of and to represent the Disability Community and I consider myself an activist for Disability Rights.Disability Rights
Sadly, the world we live in, through ignorance, disregard, lack of support, lack of infrastructure and even pure discrimination, reinforces the negative thinking that disabled people are less than able-bodied people.It doesn’t appear to be a priority to accommodate or take extra measures to facilitate the lives of disabled people and to make them feel like they have the same safety, access, rights, consideration, service, accommodations, and opportunities as everyone else. Intentionally or not, we are made to feel pitied, like freaks, stupid, insignificant, incapable, difficult, or inferior.
Don’t Judge Disabled People
Albert Einstein said: “Everybody is a genius. But if you judge a fish by its ability to climb a tree, it will live its whole life believing that it is stupid.”Don’t judge people by their disability and see only the disability and not the person, and don’t assume that our lives are a tragedy because we are disabled. This is our life and we are used to it. Many times the hardest thing we have to deal with is people’s reaction to our disability rather than the disability itself. Don’t see disabled people as different from you; we are all people with similar desires, needs and aspirations. Just because we look or move differently on the outside doesn’t mean we are not the same as you on the inside. For whatever disability you see, there is so much more depth, value and wisdom in that person, and in all of us for that matter, that is immeasurable. I believe the true measure of a person and in a community is not in abilities and disabilities, it’s in how we make each other feel as humans and how we connect with and help each other as a way of life.
What Can Be Done to Help the Disabled?
The intention of this post is to raise awareness, promote change and give some insight on some of the negative experiences I’ve had in my community from the point of view of a disabled ambulatory wheelchair user. The reason I am disabled is due to neurological spine damage, which impacts my walking ability. Keep in mind that most people I interact with in my life, people I know, as well as strangers, are very supportive and good intentioned, but the reality is, we need to do better in raising awareness and community support. The message us disabled people receive through these negative experiences is that we don’t matter as much as able-bodied people and that we should be grateful for whatever is provided to help us and not to complain or ask for more. In reality though, we are living in a world that was not built with disabled people in mind at all. If anything, we are an afterthought.1. We don’t need pity, we need respect and inclusivity.
If I had a dollar for every person who told me they felt bad for me, I’d build more ramps for us all.
I’ve never actually felt better getting someone’s unsolicited pity because I certainly don’t want to feel pitiful. Or sometimes out of the blue, not related to anything in conversation, someone tells me to hang in there and to stay positive. I understand where they are coming from, but that is not what we need, especially from people who don’t necessarily understand how it feels to be disabled.
Same goes for people’s unsolicited advice on what caused or is a cure for our disability. Trust me; we don’t want to hear it, especially coming from non-medical professionals. There’s a time and place for everything and often discussing these issues is not during a social event with people that hardly know you or during an appointment you book for yourself to relax like with a massage therapist or aesthetician.
I think if people really are concerned about disabled people then they should add some action to that and try and help make a difference in their community. What we want is to feel normal and independent like everyone else and have rights and access to things like everyone else. Tangible things like better wheelchair accessibility, automatic doors, handicap parking spots, better parking lot designs, better building designs and more respect in general for disabled people.
At the end of this post, I also included a list of other practical ways you can help someone you personally know who has a physical disability.
2. Add more ramps.
There are stairs and steps everywhere! I attended my son’s elementary school graduation at a reception hall that didn’t have elevator access to the top floor where the reception was being held. My husband had to literally carry me to the top floor in front of all the guests. Also, the bathroom was on the main floor and no bathroom was available on the top floor. This has happened several times with different reception halls. It feels like there are steps everywhere, but buildings with no ramps or elevators to get to the different floors. What is a physically disabled person to do in that situation? I recognize that most people can go up and down stairs, but as a disabled person, shouldn’t I have the same inclusivity and accessibility consideration as everyone else even if it means special implementation is required? As a community, shouldn’t we make it a priority to ensure that basic disability needs are met so that all taxpaying people like me can feel valued and included? The truth is, reception halls are the least of my problems. So many establishments I visit like stores, restaurants or therapist locations, simply don’t have ramps to get into the building, much less elevators to get to the different floors. The only reason I am able to make appointments in places like these with no accessibility is because I have friends or family that physically help me move my body and lightweight transport chair to the destinations. As my disability increases, I will no longer be able to make it into these buildings with a wheelchair or scooter. Some of the buildings that do have ramps, have narrow old ramps literally falling apart with no railings and are very dangerous, especially in the winter when they are covered in ice.3. Fix automatic doors that don’t open.
I’ve been going to the same gym for three years. I love the gym and the staff is great but the automatic door opener has been broken for three years. I made a request for them to fix it, and they did, but it ended up breaking again after a month and never got fixed again. When I inquired about it again I was told that the building manager was aware and it was out of their hands and there was nothing they could do. I don’t find this to be right especially at a place to which I pay a membership. In my experience, the majority of public establishments don’t have automatic door openers and from the ones that do, I’d say about 8/10 of them don’t actually work. This happens at hospitals and clinics, as well. As mentioned before, I’m fortunate in my life that I’m with friends or family when I leave my home and they help me get around, pushing me up hard-to-access places and pulling or pushing heavy doors for me, but the truth is that if I was alone, I would not be able to enter these buildings.4. Disability bathrooms are not storage closets!
Some restaurants I’ve been to, high-end and regular restaurants, that have their main bathrooms on different floors, use the disability washroom on the main floor as a broom or storage closet! The reason I know this is because I’m the lucky one who gets to use it! It was very interesting trying to navigate my wheelchair in there and not have a broom or table fall on top of me. A similar thing happened when I attended my son’s private high school and realized that the elevator also served as the janitor’s equipment station. A similar instance of this occurred at a church basement where the exit of the elevator was obstructed by boxes of stock. The same thing happened to me at my dentist’s office where the elevator exit was blocked by chairs. At the gym, the elevator entrance was blocked by a treadmill. I was once at a restaurant where the only wheelchair accessible bathroom was literally in another building, which I was escorted to by a server, through an elevator, down a corridor, into another hybrid bathroom/storage area. We are not asking for special treatment, we are just asking for the same consideration, respect and courtesy that able-bodied people are given for their basic needs.5. Better handicap-accessible parking lots.
Who designed these parking lots? The design of some parking lots is downright laughable and you can’t help but wonder who designed and approved them and what they were thinking. This further reinforces that the needs of disabled people are not really considered a priority and are more like an afterthought than anything else. Handicapped spaces are available, but completely opposite from where the curb is lowered to allow wheelchair access. That is assuming that the curb lowers to begin with; other curbs go on with no end in sight. Some handicapped parking spots have elevated medians on both sides so that there’s actually no wheelchair accessibility on either side of the vehicle and you are literally stranded in your vehicle. Most lots don’t have enough handicapped spots, if any at all. This is always fun, especially when able-bodied people use the spots. I’ll never forget when a woman who wasn’t disabled stole the only available handicapped space, so she could pick up her dry cleaning and when I called her on it she asked me “What are you going to do about it? Call the Police?” Or the time when someone on a motorcycle thought it would be ok if he parked on the part of the handicap spot that was meant for where the door would open, blocking the wheelchair access.6. More stylish disability adaptation products.
Does adaptation have to be ugly? I adapted my home recently and it was such a challenge to find equipment that was stylish and nice looking. Everything looked like it belonged in a hospital. I’ll never forget this one time when I booked a hotel room at a five star hotel that I had visited before, but this time I asked for an adapted room. I was given a room half the size of the other rooms, but for the same price. It also had an old outdated bathroom that was adapted, but downright ugly. Is that the treatment we get because we are disabled?You can’t help but wonder if people think that when you are disabled you lose your sense of taste, style and appreciation for nice things. Why wouldn’t we be like everyone else who enjoys nice things?
7. Better service and accessibility by airlines.
My wheelchair isn’t luggage, it compensates for my legs. I don’t agree with me having to check in my wheelchair like luggage when I’m boarding a flight and literally make a silent prayer that it won’t be damaged in cargo or lost. I’ll never forget the time when my wheelchair was lost on a flight and it was such an ordeal to get me off the plane and into the airport. Why is it okay that we may have to go through things like that? The same way able-bodied people walk, that is my only means of transportation and shouldn’t be separated from me. I feel like airlines should provide better service and accessibility to disabled clients who can’t easily walk or require leg room for medical reasons. There should be a secure designated area on the flight where we can sit. If there’s room for first class seating, there should be room for disabled seating as well.Practical Ways You Can Help People with a Physical Disability:
- Spend quality time with the person. Call or message them. Pass by to visit them.
- Focus on positive things and on blessings that a person has in their life and not only the disability. Talk about their achievements, family, career, etc… There is always something good available to focus on.
- We all need to eat, so you want to help? Drop off food or another treat the person would enjoy and appreciate.
- Especially for people with mobility issues—offer to pick up and drop off items they may need from exterior locations, especially those with limited or no handicapped access.
- Offer to help with the logistics of getting to appointments.
- Offer to watch someone’s kids for a few hours to give that person a break (if they are a parent of young kids).
- If planning an event or activity that includes that person, be considerate and try to make sure that there is handicapped access and parking.
- When someone uses a mobility device, don’t make a big deal about it. Understand that they are used to it and that it’s a part of their life. It may be awkward for you, but it isn’t awkward for them unless you make it awkward.