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!