Roll with the Punches

Roll with the Punches

"Cope with and withstand adversity, especially by being flexible. to adjust to difficult events as they happen. to be able to deal well with difficulties or criticism"
http://idioms.thefreedictionary.com/roll+with+the+punches 

If life has taught me anything over the past ten years it is to roll with the punches. I've been on a roller coaster ride that has hit some super high peaks, hurtled downward faster than I could have imagined and taken me places I never would have imagined. But I have come through stronger because of these experiences and that is why "Rolling with Life's Punches" seems like the perfect title and description for this blog.

It also seems like a good name given that I roll through pretty much all of life. As a wheelchair user rolling is what I do and going through life on wheels will definitely expose you to some adversity!  Flexibility and adaptability are essential qualities to navigating life on wheels when most of the world isn't set up with accessibility in mind. On pretty much a daily basis I find myself rolling with the punches that life throws my way and that's what you'll be reading about on this blog (should you choose to read past this first post!).

Hopefully reading about some of the experiences I face will give you a new perspective on what it is like to live in a world that wasn't designed with you in mind. Be prepared to learn what it's like to roll with life's punches!

 

 

Trash Can Blessing

Every Sunday night I roll the garbage can to the curb for pick up. Every Monday afternoon I roll the garbage can back up to the garage. It's a mundane task most folks do on a weekly basis. But, in my life, even the most mundane tasks can become opportunities for unusual interactions!

Recently I was pushing the garbage can up my driveway when a car driving by slowed down and the older couple in the car rolled down their window and asked if I needed help. I politely declined and the woman looked at me and said "Well, God bless you, my dear." Then they rolled up their window and drove away.

This all took place in a matter of seconds and it left me laughing and shaking my head. I'm not sure exactly what I did to prompt this blessing; was it my valiant struggle to push the garbage can or perhaps my brave attempt to suffer through this chore on my own? Maybe she thought it was going to take a miracle for me to get the garbage can up my driveway so she figured I needed divine help?

Whatever it was, I'm guessing you've never had someone bless your efforts to take out the trash!

A Valued Compliment

I'm pretty used to getting compliments that aren't really compliments. Backhanded compliments like "You are too pretty to be in a wheelchair" (what does using a wheelchair have to do with attractiveness?) or "It's really great you are able to be independent"(why would you assume I wouldn't be independent?). Compliments that would be ridiculous if they were turned around and said to able-bodied people (which I have been known to do):

"You are really good at navigating your wheelchair through tight spaces" ("Thanks, I was just noticing how nicely you avoided that display back there too. You are really good at using your legs to turn your body in different directions.")

"Your arms are really strong from pushing around all day." ("Your legs must be really strong from walking up all those steps.")

"It's so great you can do so many things on your own." ("You know, I was just thinking the same thing about you!")

When I give these "compliments" back to able-bodied folks it usually catches them off guard. It turns the tables and (hopefully) makes folks think about what they said and consider if the compliment they gave was really justified. Sometimes it just confuses them but I like to think I may have planted a seed about disability being a normal part of life. That maybe they might start to think of me as a regular person doing regular things- from a wheelchair. That I don't need a compliment or cheerleading for doing a normal, mundane task.

But I distinctly remember one day when I got a compliment that stood out as an actual compliment.

Me with my box piled high

I was at the grocery store buying groceries. Since pushing a cart isn't practical, my strategy is to use a big box on my lap to hold my purchases. I've gotten pretty good at piling my box high with what I need/want to buy. It's almost a point of pride to see how high I can pile my box and still see over the top.

That day I'd already gotten a few empty platitudes about my presence in the store being inspirational when a man came by and said "I'm impressed with your system- looks like it works well". That was it. Nothing major, but it stood out to me because he was complimenting me on my creativity and problem-solving. He was complimenting me on something I put some time and effort into; something I am proud of figuring out. It might have been a little thing but it meant a lot.

So, next time you think about complimenting a person with a disability, please make sure you aren't complimenting us on our existence or ability to do ordinary everyday things. If you aren't sure, think about how you might feel if someone gave you the compliment you are thinking of giving. There are lots of options most of us would gladly accept: compliments on our creativity, style, kindness, hard work, adaptability, perseverance etc. Feel free to practice on my and I'll be happy to give you feedback! :)

Listen to Me!

Living with a disability comes with certain challenges but usually the biggest challenges come from people's reaction to your disability. One of the reactions that irritates me to no end is when people don't see me as a person capable of making my own decisions or insist on ignoring or arguing with a decisions I have made. People don't understand that by insisting on what they think is best they are disrespecting my right to choose and make my own decisions.

I don't mind getting asked if I need help but what I do mind  (a lot) is when people don't listen to my answer of no and insist on helping anyway. When I give presentations or trainings about working with people with disabilities the question about whether or not to ask someone for help often comes up. I explain everyone will have their own answer but my answer tends to be Why are you asking? If you see someone looking lost or struggling to pick something up- disability or not- would you ask if they need assistance? If yes, feel free to ask a person with a disability. But if you are asking someone simply because you see they have a disability and automatically assume they need help them you probably need to rethink your motivation. But the thing I always stress is that if you ask someone if they want/need help, listen to their answer! If they say "no", go on your way. Respect them and their expertise of what they can and can't do and move on.

The place I run into this issue the most is when I travel. I recently came home for Thanksgiving which involves flying. There are a couple of instances where I can pretty much count on being ignored and overruled on the help issue and it makes me feel angry and powerless each time. I realize that many of the employees don't have training about working with people with disabilities and I try to be understanding and provide education as best I can. Most of them are good at asking questions- but are usually really bad about listening to the answers.

Flying as a wheelchair user is a hassle and requires you to depend on others to get on and off the plane. I get to pre-board the plane so I go down the jet bridge first. Then I transfer to an aisle chair that will be pushed onto the plan to get me to my seat. Employees usually ask what assistance I need to transfer from my wheelchair to the aisle chair and I always say "none". Sometimes they listen and stand back and let me transfer my own way, other times they try to grab my arms to "help" me. Imagine having someone grab your legs as you go upstairs- not only unhelpful but actually dangerous. Same for me when you grab my arms when I am transferring. One thing that has helped is saying "I self-transfer" is language they seem to understand. Thank goodness!

Another problem area is going up the jetbridge when I get off the plane. The jet bridge is usually uphill going from the plane to the airport and it can be pretty steep. However, after sitting on a plane I don't mind some exercise so I always try to tackle it myself. I'd say 9 times out of 10 someone asks me if I need help, I say "no" and they start pushing me anyway. Even when I insist I don't want their help they continue to push me. Imagine someone grabbing your arm and physically dragging you somewhere all the while insisting that they stop. It makes you feel very powerless and vulnerable. I know people have good intentions but that doesn't make it ok. Several times I have said to the unknown person behind me "It is very rude to touch me without my permission" or "I am telling you to stop, please let go". Unfortunately, people usually feel offended because they "were only trying to help" and they don't understand how much they have disrespected me by not listening to me. Then I feel like I am the angry wheelchair person instead of someone who is simply asking to be respected and taken seriously. The other option is to shut up and submit to their "help" which makes me feel defeated and disrespected- not really a great option either.

The other area where I tend to get overruled is navigating inside the airport. I often get asked if I need help finding my way to my gate and unless I am in a hurry I prefer to find it myself. So I say "no" and then often have someone way "No, it's ok, I will take you there". I don't know if their insistence is because they want a tip, think I can't manage on my own, or are expected to be overly helpful but in any case I don't like it. My usual strategy is to duck into the first bathroom I see or don't even stop long enough to answer their questions and just keep going. It feels rude at times but not any ruder than being stuck with someone who insists on giving you help you don't want.

Hopefully this hasn't ready like one big complaint but more of an explanation of why it is important to listen. I don't ever want to discourage someone from offering help but I do want everyone to listen to and respect the answer that is given. Don't take away my choice and don't disrespect my decision. If I need help I will gratefully accept it. If I don't, I may thank you for asking and move on. And I would like to ask you to do the same. I am not your good deed of the day. I am a person who deserves respect and can make my own decisions.

Introduction

I consider myself a fairly ordinary person who is doing fairly ordinary things with my life. I am 28 years old and just graduated with my Master's of Science in Social Work. I have a full time job as the Assistant Director of the Disability Services office at a University. I have a car and an incredible dog who is also my best friend. I live in a house with a roommate and we pitch in to take care of the chores. I enjoy playing tennis, running and riding my bike. Just your average 20-something life, right?

When I meet people and they hear the things I am doing I often get complimented on how well I am doing for myself or how amazing it is that I have been able to accomplish so much or that I am an inspiration to them because of how I live my life. I am very grateful for all the experiences and resources I have, yet somehow I find the responses I get from people are usually out of proportion to my accomplishments. Nothing I am doing stands out as particularly exceptional yet that is how I am sometimes treated by people and I have a sneaking suspicion of the reason. My wheelchair.

I started using a wheelchair when I was 18. Immediately I noticed the changed perceptions and expectations that people had for me based only on the sight of the wheelchair. Before I started using a wheelchair I never was told it was "so great you am able to go to college" or "it's really impressive that you can drive". Those activities are considered fairly normal for a teenager or college student in the U.S. and yet as soon as I acquired a visible disability people's expectations about my abilities changed and all of a sudden it was noteworthy and impressive for me to accomplish the same activities that were before seen as "normal". Those limited expectations have continued to follow me throughout my college career, my sport involvement, travel, graduate school, internship and employment. Everywhere I go I surpass people's limited expectations for me as a person with a disability simply by doing normal, ordinary things. It is frustrating to say the least.

People with disabilities historically have had more limited opportunities to pursue regular life activities- education, employment, recreation- but it's not necessarily because of their disability. It's because society is not designed in a way for people with disabilities to be able to fully participate and so those opportunities often were not available to them. When people don't have access to accessible transportation, affordable healthcare, adaptive equipment or reliable attendant/interpreter services people with disabilities are not able to fully participate in society. It's not because we walk, talk or think differently.

I am thankful that I have had the resources, accommodations and services to allow me to pursue higher education, to adapt my vehicle so I can drive, to purchase or borrow sports equipment, to be matched with a service dog and to live in an accessible house. With the right adaptations I can do pretty much anything. And so can other people with disabilities.

If you've stuck with me this long, I'd like to challenge you to recognize that people with disabilities accomplishing ordinary things shouldn't be surprising or inspiring. It should be the norm. Disability should not change our expectations about what someone can achieve or accomplish.

So, that's me. An ordinary human going about my ordinary life in a not-so-ordinary way. I hope you check back in again to learn more about me and also to learn more about what it's like to be a person with a disability living in a society that has a lot of assumptions and ignorance about disability. Hopefully the time you spend reading my blog will give you new perspective on disability through the encounters I experience every day. Thanks for reading!