This summer I took part, with over 300 other writers, in an online event to raise awareness of what it means, and what it takes, to empower people who are living with disabilities.
Like so many others, I never expected to fall into this Club, one of any number that no one wants to belong to. People we encounter everyday all have their own struggles and heartaches and challenges, it is part of life. For most, hardship is occasional and short lived. For those of us with chronic conditions or permanent disabling injuries, daily living equals confronting limitations minute by minute.
As Multiple Sclerosis steals more and more from me, it has become harder to do things I completely took for granted my whole life. Getting in and out of bed, getting dressed, taking a shower are all normal activities of daily living that were done mindlessly and effortlessly before MS, but now all take exhausting effort. Once those things are done and I am finally out the door (doing an inventory in the car to make sure I haven’t forgotten something and I actually have all my clothes on) I have to then decide what am I going to use to get around. Will a cane suffice? Is it too hot for that? Then I’ll use my walker. Unless I have to walk for more than 10 minutes at a time, then I need the wheelchair. The cane and walker I can manage by myself. The wheelchair, I need someone to help me load, unload and push me. I can’t push myself because I have the added bonus of an almost useless right arm following a shoulder fracture.
My doctor has ordered a power wheelchair for me. We have already begun the battle with the insurance company to cover it. But my co-pay for the new chair would be over $1000. I don’t have $1000, so the whole thing is moot. Additionally, a power chair is so heavy I need a lift or ramp to get it into my SUV. I can’t afford those things either and they are not covered by insurance.
Are you still with me? We haven’t even left the driveway yet.
I was laid off in February. So if it is a job interview I am heading for, I have to weigh the pitfalls. Showing up with a cane or walker, how low on the list do I drop? It is clearly pretty far, as, despite a stellar resume, I have received no offers to date. But it is impossible to prove discrimination.
I always have to consider where I am going and how I will negotiate the landscape there. Are the doors easy to operate? Are there stairs? Is there a convenient bathroom?
Remember, we’re still in the driveway.
This is our daily reality.
Once out in the world, thanks to the Americans With Disabilities Act, there is more disabled access than ever before. Naturally, it is a work in progress. It is impossible to retrofit every existing structure in the United States to accommodate a variety of disabilities. My philosophy is one of patience and reasonableness. To be a gadfly on this issue would not serve me, or anyone with a disability, well. I see how people like that are treated, how they are resented, how they are not taken seriously and how they ultimately damage the cause they are trying to promote.
It is essential to recognize ADA compliance as an important issue that effects us all, not something that a few whiners with a sense of entitlement are carrying on about. It is important to be taken seriously and to be understood, because there still is so much to be done. And this needs to be a concern for everyone because every human being has the potential to become disabled.
For one thing, people need to be taught how to interact with people with disabilites , to behave just as they do with everyone else. This was emphasized to me when I went to the theatre with my friend last week. People, when they didn’t look away, gave me pitying smiles. Several leaned over, almost appearing as though they were going to cluck me under the chin, and asked if I was enjoying the show. “Very much so!” I would reply with a frozen smile. After a few times it got a little comical. Have you ever been asked that question by a complete stranger?!? Don’t be artificially nice to someone who is disabled. It is insulting and creepy.
I was raised in an Irish Catholic tradition of self effacement and a firm belief that pride goeth before a fall. Combine that with 1950’s traditional gender roles and chronically low self esteem and I am not a person who is comfortable with the word “power”. Or with asking for things I need.
On the other hand, I also have a deep vein of stubborn rebelliousness that has bubbled up my whole life, making for a constant dichotomy that has both kept me strong and gotten my ass in a heap of trouble on occasion.
This wacky combo allows me to be patient with the barriers that are place in front of me, but tough enough to challenge things that can clearly be changed.
This would be my wish list of disability awareness and empowerment:
• People with disabilities are just like everyone else. Treat us that way. Don’t treat us like exotic objects or creatures needing pity. We used to be you. You could be us.
• Don’t refer to the accommodations given to someone with a disability as “perks”. We don’t want special favors, or “concessions” as another person with a disability referred to the accommodations that are occasionally necessary. We just want to live our lives as normally as possible.
• Remember, we would gladly give up that parking placard for the capacity to walk again.
• Don’t make assumptions about a disabled person’s abilities. Someone in a wheelchair is most likely to be just as cognitively aware, if not more so, than everyone else. Don’t assume they are simpletons and talk to them like they are 5 years old.
• Don’t dismiss us from the job market. I am desperate to work again. But prospective employers see my limitations, not my years of experience. They lose the fact that I excel at trouble shooting and problem solving and, with my work ethic, would be an asset to any employer.
• If you are aware of an access issue either in your place of work or any other building, bring it to someone’s attention politely and with the assumption that it is either already under consideration or has not been an issue before. Do not behave as though it is a deliberate attempt to keep disabled people out. Like with anything else, you get more flies with honey than with vinegar. And yes, it is the law, but sometimes making it work takes an incredible amount of time and effort.
• Be sensitive to the architectural integrity of places that may never be capable of becoming completely accessible, such as historical buildings. People with disabilities do not want to destroy the historic legacy we have in the name of access.
• If the access we have is not ideal, such as is only achieved through the kitchen of a restaurant, don’t take it personally. Assume that they have done the best they could in terms of the architecture and be happy for the access that you wouldn’t have otherwise.
Finally I would implore, be an advocate for the disabled. Empowerment is something everyone should feel, no matter what their status. Awareness takes time and it takes teamwork. If you don’t already know someone with a serious disability, odds are you will. An accident or illness can put you there with the speed of light. So this is an issue for all of us.
Thanks. Just by reading this, you could make a difference.