Empower Me.

empower-meOur greatest fear is not that we are inadequate. Our greatest fear is that we are powerful beyond measure. It is our light, not our darkness that most frightens us. We ask ourselves, who am I to be brilliant, gorgeous, talented and fabulous?

Actually, who are you not to be?

You are a child of God.

Your playing small does not serve the world. There is nothing enlightened about shrinking so that other people won’t feel insecure around you. You were born to manifest the glory of God that is within us. It is not just in some of us, it is in everyone. As we let our own light shine, we unconsciously give other people permission to do the same.

As we are liberated from our own fear, our presence automatically liberates others.

Marianne Williamson

It has been several ago now, but I remember the day well. I had gotten up early to get ready to go to the capitol building in Topeka. Shannon Jones, the then director of the Statewide Independent Living Council of Kansas had asked me to provide testimony about a potential program that would enable people with disabilities who wanted to work the opportunity to do so without the risk of losing their government funded caregivers. The program made sense to me. I require caregivers on a daily basis to do fundamental things like dress and do my laundry. I knew I wanted to work, but couldn’t unless I had the support of my caregivers. My working would allow me to earn a paycheck and pay into the system that provided me so much support. I saw it as a win-win for everyone. So Shannon invited me to tell my story to Kansas senators and representatives who were unsure of the need for the program. I was excited about the potential good things that could happen in my life if this program came to be.

My caregiver was late that morning. Very late. I found out later that she had forgotten what I was doing that day and so the adjustment in time for her caregiver shift had slipped her mind. As I was waiting, I was frustrated. The day was no different from any other day in terms of what I could and could not do for myself, but because I did not have the support that I needed at the time that I needed it, that day it hit me hard that I can’t drive and I can’t put on my own socks and shoes.

I felt less than. I felt inadequate.

When my caregiver finally arrived, we raced around the house  like mice in search of the last piece of cheese to get me ready and made it just in time for me to catch my ride.

When I got to the capitol I was nervous and when I found Shannon she could tell. I was frantically going over the three pages of notes I had tried to memorize and was failing miserably. The fear of screwing up my testimony had me almost paralyzed. I couldn’t think. I couldn’t focus. Shannon got the vibe

She sat down next to me and said “Lorraine, you communicate well and you have a great story. You want to work and the program we are advocating for  would enable you to do so. Just go talk to the senators and representatives on the committee and tell them who you are.”

With that, she took my notes away from me and announced that I was speaking next.

Gulp.

As soon as I started talking, I felt more comfortable. I told that committee all the ways that program could make my life better and that I didn’t see a downside. I asked to be able to pay taxes. I asked to be able to contribute in that way. I told them that my ability to earn a paycheck would do wonders for my self-esteem because I wouldn’t feel like I was taking from government programs all the time. I told them I felt what I had to offer was valuable. I told them I wanted to work.

When I was finished, Shannon told me I had done a really good job. That made me smile.

On the way home I realized that I could share my story and be a voice for other people with disabilities, and feel powerful doing so.  In fact, my platform as Ms. Wheelchair Kansas 2007, was “Use Your Power!”

In the years since on my blog and in my other writing I have tried to do just that and hopefully, I have made an impact and challenged some negative perceptions in the process.

I have heard it said that with power comes responsibility.

Empower me.

Posted in Advocacy, blogging, changing perspectives | Tagged , , , , , | Leave a comment

I’ll Do It On Purpose

stella-young-quoteA few months ago, I wrote a purpose statement for my life.  It was an exercise suggested in the book “The Success Principles” by Jack Canfield.  He is a man I greatly admire for many reasons.  As one of the founders of “Chicken Soup for the Soul”, I kind of feel a connection to him because I have had eight stories published in those books so far. He also regularly uses a technique that I like called tapping (more about that here) And, if memory serves me correctly, I think he holds the Guinness world record for the author with the highest number of books to be on the New York Times Best Seller List, with something like a total of 47 books and counting.

When I heard that, the “author who has written a bestseller wannabe” in me was wicked impressed.

So I was intrigued when I came across this book he wrote about success.  In the first few pages he talks about the importance of having a purpose statement because the theory is that if you want to be successful in life, you have to know what your purpose is.  And that way, you can make sure that all your efforts along the way to success are aligned with your specific purpose.

That concept made sense to me, so after thinking about my passions and what I want to achieve, I came up with the following personal purpose statement:

“My purpose is to use my passion and communication skills to encourage, educate and empower people to respectfully break down barriers between people with disabilities and those without disabilities.”

At the core of my being, I believe everyone should be treated as equals.

Last night I posted a video to my Facebook page. In the video Dr. Frances Ryan, a wheelchair user, says we need to stop calling people with disabilities inspirational because doing so portrays them as something other than human.  She discussed how much she hates “inspiration porn” which is, according to the late Australian activist Stella Young “the misplaced admiration of people with disabilities because of their disabilities.”

I agree with the sentiment and said so when I posted the video.  The comments that followed led to a thought-provoking discussion.

What I found the most interesting was that my friends with disabilities were similarly put off by the word “inspiring” and there were a few of my friends without disabilities that didn’t seem to understand why.

My favorite comment was from my friend Lindsey, who happens to have Spina Bifida.  She said:

“My disdain for inspirational porn is that things that should be normal are “inspirational” when someone with a disability does it. I’m an inspiration for going to work. How is that different than my nondisabled counterpart going to work? To me, it implies I’m not expected to be able to work just because of my disability. So really the “you’re an inspiration” is a passive aggressive way of saying I don’t think disabled people can be normal.”

On this issue, Lindsey and I are on the same page.  Now don’t get me wrong.  In some cases, I am flattered when someone calls me inspirational.  But I want it to be specifically about what I do, instead of their assumption about what my life is like.

For several years one of my passions was wheelchair ballroom dance, and several times my partner Brandon and I were able to perform at various competitions.  On one such occasion, the guy who was filming all the performances asked me if he could put the video of one of our dance routines on his business web page.  I agreed.

A few days later, I went to the page and looked for the video.  It was there, and the caption read “I thought I had problems…” and went on to say what an incredibly inspiring performance our routine was.

The whole thing made me feel very patronized and “patted on the head.”

I know he had the best of intentions.  He, unfortunately, missed the point.  I dance because I think it is fun and it is important to me that people with disabilities be portrayed from a position of power, not pity.

I emailed him and let him know that my life was pretty great.  He took the comment down.

The pilot Chelsey “Sulley” Sullenberger, who landed a plane in the middle of the Hudson River did something inspiring.  Because of his efforts, people lived that otherwise would have died.

There were hundreds of inspiring acts in the aftermath of the terrorist attacks on September 11th, 2001.

There are also tons of examples of everyday inspiration, like when someone receives a kindness and pays it forward.

I wake up every morning, have a caregiver help me get dressed, eat an English muffin and go about doing what I have to do for the day.  I don’t consider any of that inspiring.  I do what is necessary to live my life simply because the alternative would suck.

If someone watches a dance video of Brandon and me online and they are moved or inspired, that is awesome. If someone reads something I wrote and tells me that something I said made them see a situation or circumstance in a different way, and the writing inspired them, then that is cool.

What I am put off by is when someone sees me doing something they routinely see people without disabilities doing and call me inspirational because they don’t expect it from me. Or when someone calls me inspirational when they don’t know anything about me other than my disability.

Every few days I review my purpose statement and I make sure the things I am doing are congruent with the things that I want. At the core of my being, I believe that everyone should be treated as equals.  That is never going to happen as long as there are people who are inspired just because I am employed.

Sometimes people tell me that the specific things that I do have inspired them in some way, and on some days that is what keeps me going.  So for as long as I can I will continue to use my voice to write and advocate in ways that potentially empower people with disabilities and those who care about them.

And I will do it on purpose.

 

*Below is the video mentioned in this post.

 

 

 

 

Posted in Ableism, Attitudes, changing perspectives, communicating respect, disability etiquette, Emotional Freedom Technique, Following Dreams, Get To Know Me, negative perceptions, What some people don't think about, wheelchair dancing | Tagged , , , , , , , , , , , , | 4 Comments

A Lack of Vision…

Trischa Zorn-HudsonIn this season of the Olympics ending in Rio last week and the Paralympics getting ready to begin, I have been thinking about the athletes often lately.  It is common knowledge these days that Michael Phelps is the most decorated Olympian in history, with a total of 28 medals.  Phelps’ accomplishments are impressive, and I have always loved the story that he started swimming as a way to channel his energy because he is affected by Attention Deficit Hyperactivity Disorder.  It is probably safe to say that in the last few years, Michael Phelps has become, to many people in America at least, a household name. He is undoubtedly worth millions of dollars and has many endorsement deals.

Now I am going to tell you the name of another American swimmer.  Her name is Trischa Zorn-Hudson.  Never heard of her?  I’m not surprised.  She is the most decorated athlete in Paralympic history and she has won 55 medals over the course of seven Paralympic competitions, (41 gold, 9 silver and 5 bronze) starting in Arnhem in 1980, and ending in 2004 in Athens.  As a result of being born with a condition called aniridia, (without the irises of her eyes) she has impaired vision.

The first question that comes to mind for me is this:

Why do most people in society know what Michael Phelps has achieved while most have never heard Trischa Zorn Hudson’s name?

Are her accomplishments any less impressive than his?

Did she put any less effort into her training?

As a former (almost) Paralympic athlete myself, I can only guess that her intense workouts could be grueling, and every day she poured as much of herself into them as she could. Because of her disability, she also had to do something else that I would be willing to bet Michael Phelps and most other swimmers rarely have to think about. In a View News Article published on the usaswimming.org website, she said “I would have to count my strokes from one end of the pool in an outdoor pool.  Then, if you go to an indoor pool, if there is not enough lighting, it is pretty dark, I would have to do the same thing.”

Her amazing  accomplishments don’t end with her medal count.  Ms. Zorn-Hudson was the first ever person with a disability to earn a full athletic scholarship to a Division 1 NCAA University, the University of Nebraska.  She was inducted into the Paralympic Hall of Fame in 2012.

In the same View News article, Ms. Zorn-Hudson talked about her various experiences over seven Olympic Games.  “In 1992, that was the first time at the Paralympics that we were able to hear our individual national anthem, [instead of] a Games Anthem.  In 1996, we were able to have the same venues as the Olympic Games.  In 2000, having similar uniform funding, and then in 2004, you were experiencing the incentive money for your achievements for your Games, getting paid for your medals.  That’s huge.  When I was swimming, I had one sponsor…”

Only one? Seriously?

A recent article on CNN Money called “Paralympians gold medals are worth less than those of Olympians” stated that Paralympians get only $5,000 from the U.S. Olympic Committee for winning gold. Olympians get $25,000 for their gold medals.  Silver medals are worth $15,000 for Olympians, while Paralympians only get $3,000. Bronze medals are worth $10,000 for Olympians and $2,000 for Paralympians.”

According to her Linkin profile, while attending the University of Nebraska, Ms. Zorn-Hudson earned a degree in Elementary Education and Special Education. She taught school for nine years, earned a Master’s degree in School Administration and then a law degree.  She currently works at the Department of Veteran’s Affairs.

She has a notable career outside the world of sports. That is something Michael Phelps may never need.

In my life, I have had many experiences when I was not treated with the same respect as someone who does not have a disability.  When I see glaring examples of this “second class” or “less than” treatment, it totally drives me nuts.  And for me and countless other people who happen to have disabilities, I think that is absolutely understandable.  That is the definition of ableism.  It just feels completely unfair.

Ms. Zorn-Hudson was an incredible  athlete with a visual impairment who is the most decorated Paralympian in history.  She is quoted as saying “Swimming is a sport that allows you to be free and not really restricted in any way.”

It seems very sad to me that most of the general population has no knowledge of her numerous accomplishments.

In this instance, perhaps it is our society that has a lack of vision…

 

Posted in Ableism, Advocacy, Attitudes, Olympics, Paralympics | Tagged , , , , , , , , , , | 2 Comments

What Might Have Been…

What might have been 3A friend of mine posted a video on my Facebook page yesterday. He said he was feeling nostalgic. It made me pause and smile. He gets it. I always get nostalgic when it is time for the summer Olympics. I have known this friend, Phillip since I was in fourth grade; he has cerebral palsy, like me. In high school, we were both part of a sports team for people with the same condition. I cannot speak for Phillip, but the experience completely changed me. Like many other people at that stage of their life, I felt awkward and gawky, having a disability that made me different from my peers magnified my isolation about a trillion percent in my mind.

When I joined that team, I had mentors for the first time. There were people I knew who had similar difficulties and they held jobs, had friends and were in serious romantic relationships. It gave me a glimpse of what my future could look like.

And it gave me something else as well. A burning desire to be good at sports. Competitions were held at various times every year. If an athlete did well in his chosen events at a regional level, then he would progress to the national games, and if those results were good, then said athlete would progress to international competition, what is now the Paralympics.

As a freshman, the dream seemed almost impossible. The fact that I was a wheelchair user was nothing but a negative in my head at that point; I saw myself as a broken, defective, collection of damaged goods.

But sports? Participating in these events was something I could only do because of my disability, not in spite of it. As I began to practice around these people who were older than me and were also successfully living out their dreams, my perspective shifted, little by little, towards a more positive mindset. And if I could only be an athlete on this particular team because I had a disability, I made up my mind that I was going to be the best athlete that I possibly could be.

I enlisted the help of the the head football coach at my high school, asking him if he would mind writing out a workout for me to follow. His kindness was infinitely more than I could have imagined. Not only had he developed a full workout for me to follow by the next day; he worked out with me daily for at least an hour for the next four years.

With his guidance, I learned how to reach my arms back farther on the wheel so I got more distance out of every push. He controlled the stopwatch as I rolled around the track, always giving gentle suggestions as to how to go faster. He taught me how to breathe correctly as I was lifting weights. He taught me how to stay in my lane as I was pushing around the track. In the process of teaching me these technicalities of how to get better results in sports, he taught me a multitude of lessons about life and good sportsmanship as well. Day after day he stuck with me, setting the bar slightly higher and encouraging me to reach it.

It’s not like he wasn’t busy. Texas high school football is almost like a religion, at least it was back then. Coach Cripps had the most wins in our school district throughout his career. He spent time with me because he believed in me and my dreams, and I can say with conviction that he has had more influence on my life than anyone else to date. Most of the football players that he coached would most likely say the same.

All our hard work paid off. Early in the spring semester of my senior year (1986) I found out that I was one of 37 athletes selected to represent our country in the International Games for the Disabled, what is now the Paralympics.

(Just an aside, the theme song for our team that year was Man in Motion from the movie “St. Elmo’s Fire.” It was written for a Canadian wheelchair user named Rick Hansen, who was wheeling around the world at the time. The whole story was a major inspiration to me, but I will save that for another blog post. It was a video of that song that Phillip posted to my facebook page yesterday…)

My favorite event had always been the 400 meter in track. At the time I was selected for the International Games, my best time was only five seconds slower than the world record in that event at that time. Almost everybody who knew me back then thought I was going to break that record and take it home before I retired from sports and left for college.

It was not to be.

The games were supposed to be in Belguim, and about six weeks before we were supposed to leave they were canceled because of terrorism. I felt like I had been sent to Narnia indefinitely, where it was always winter and never Christmas.

Part of me will always wonder what might have been.

A few weeks later I learned a valuable lesson. I was rushed to the hospital where both my gallbladder and appendix were removed in an emergency surgery. I had rarely felt that kind of intense pain before, and I could not imagine how much more frightened I would have been if that experience had happened in a foreign country while I was surrounded by strangers.

That is the other side of what might have been…

Obviously, other dreams have followed and like anyone else I have had my share of both struggles and successes.

When things don’t work out the way I had planned, as I process my frustration, I try to think about my “Belguim experience” and remind myself to be both wistful and grateful as I wonder what might have been.

Posted in cerebral palsy, changing perspectives, CP, Disabilitiy, Disabled Sports, exercise for people with disabilities, Following Dreams, Good Memories, Health, high School, overcoming challenges, people with disabilities, Sports, What some people don't think about | Tagged , , , , , , , , , , , , , , | Leave a comment

It’s a Kick…

karate kickThe list of things that I like to do has always been both long and diverse. Here are a few examples.  Empower people and help others feel good about themselves.  Watch movies.  Challenge negative perceptions.  Advocate.  Cook.  Go for strolls on the bike trail.  Snuggle with my service dog.  Talk to my friends.  Write about what is on my mind.  Read. And the list goes on…Another item could be easily added to that list to make it more complete.  I like to say funny things that only I can get away with.

My disability presents many challenges. It probably always will.  That is just a fact.   Some I deal with only once in awhile, and others come up on more of a consistent basis.  Many posts on this blog have described my joys and frustrations with depending on caregivers, day in and day out, with almost every aspect of my life.

Through trial and error, I have discovered one of the best ways to ensure that both a caregiver and I will have a successful working relationship is to make efforts to get them as comfortable as I can.  That can be accomplished most easily through humor.

The Christmas before last, I was in the parking lot of my local Target, hoping to finish some last minute shopping with my caregiver, Dan. Leah, my service dog, was along for the ride.  We had just pulled into the accessible spot when his car died, completely.  It was dead meat, and from what I could tell, it wasn’t going to be resurrected any time soon without a major overhaul.  So Dan did exactly what I would have done in that situation. He called his parents.  And they graciously agreed to bring him another car.  Crisis averted.

After Dan got the keys and we were headed back into the store, he casually said “I’m glad that worked out.  Otherwise, we would have had to walk home.”

Without skipping a beat, I responded. “And that would have been a problem because, you know, I can’t walk…”

I don’t know if my comment simply caught him off guard in the moment, or if he never expected me to say anything like that, but in the middle of the entry way in Target, Dan basically fell to his knees with laughter.  It was nothing short of awesome.

A few weeks ago, I wanted to make tacos for dinner.  Because I am trying to eat a whole lot healthier these days than I used to, I was using cauliflower instead of hamburger. (Trust me, steamed in a pan with taco seasoning mixed in, it’s delicious, but I digress…) I had checked my refrigerator to see what I had on hand in the way of toppings and things all looked good, but a quick check of the shelves in the kitchen told me I needed taco shells.  A new caregiver, Kaitlin, offered to go to the store and get some for me.

“What kind do you want?” She asked as she was getting ready to leave.  “The regular ones or the ones with the flat bottom?”  My limited finger dexterity doesn’t do well with regular taco shells.  They break far too easily.  It’s a mess.

(I could have gotten the ones that fall over easily…I do that sometimes.  I call them “solidarity tacos,” but on that particular day, I was feeling a little selfish…)

“The ones with the flat bottoms,” I said confidently.  “I need taco shells that stand better than I do…”

For literally about five minutes she laughed so hard that I was concerned that she might not be getting enough oxygen…

Why do I say those kinds of things to my caregivers as much as I possibly can?  Because I want them to know that I laugh at myself; that I don’t see my disability as something horrible or tragic.  I want my caregivers to relax around me so that they can relate to me as a person, and not simply “a woman in a wheelchair.”

I hate the kind of distance that exists between people who have disabilities and those without disabilities, so often times I do my best to use humor in order to close the gap.  It’s one of the ways I show people that I am comfortable with my disability, so it is okay for them to be comfortable as well.

Does it work?  Most of the time.  Most of the caregivers who look like they have to go to the bathroom instead of laughing at that kind of stuff are probably best suited for employment elsewhere.  And to be honest, whether a caregiver laughs or not is one of the ways that I can tell if that caregiver has what it takes to make it in this job long term.

Besides, I love getting away with stuff that hardly anyone else can.

It’s a kick.  Get it?🙂

*********************************************************************

I don’t usually share recipes I make because most of my recipes come about simply by trial and error.  However, I have had several people ask me for my cauliflower taco recipe after they have read this post.  This recipe is one of my favorites so here it goes…

My Very Casual Cauliflower Taco Recipe

Take one head of cauliflower and chop it fine, to the consistency of hamburger. (or put it in the food processor)  Then put it in a skillet with about two tablespoons of water. A little more water may be necessary every few minutes. No oil.  Let it steam.  After about five minutes mix in about half a packet of taco seasoning (more if you like it extra spicy) Let that heat through another five minutes or so.

Fill the taco shells with some of the cauliflower mixture and then top with your favorite toppings for tacos.  Enjoy!

Posted in disability humor, Laughter, Making people comfortable, Uncategorized | Tagged , , , , , , , , , , , , , , , , , , , | Leave a comment

Lightning and A Lightning Bug

lighting bugsWords have always been extremely important to me.  Well, the right ones, anyway.  Mark Twain said it best when he said: “The difference between the right word and almost the right word is like the difference between lightning and a lightning bug.” I have found that sentiment to be especially true when it comes to ways to be respectful towards people with disabilities.  Many people don’t understand why it is a big deal, and I can only say that in my experience, word choice in a conversation can play a big part in whether I leave an interaction feeling empowered or patronized.

Whenever I speak to groups about disability issues, many topics are covered.  I talk about what it was like growing up with a disability, and the impact that the Americans with Disabilities Act has had on my life.  I enjoy explaining to people why I think advocacy is so important, as well the importance of breaking down barriers between people with disabilities and those without.  Perhaps my favorite thing to talk about, though, is the use of language and some empowering ways to refer to those of us who have disabling conditions.

Before I get started I want to make it clear that everything I am going to say is strictly my personal opinion.  I don’t ever claim to speak for everyone who has a disability in society, and I would never want to do so.  Different people with different disabilities have various opinions on this topic, and that is how it should be.  To each his own.

One of the most offensive words in the English language to me is the word handicapped.  Although there are different schools of thought on this, I believe that the origin of that word comes from the phrase “hand in cap” and it implies that the only thing that people with disabilities can do effectively is beg. While I understand that the word has been around for a very long time and that most people do not know its origin, every time I hear it, I simply cringe.  Side note: I refer to designated parking places as “accessible parking.”

I also consider myself to be a “person with a disability” instead of a “disabled person.” My disability does not define me. Not by a long shot. My perspective is instead that my disability is a characteristic of who I am, in the same way that I have brown hair and freckles and I love to laugh. I am a person first; my disability is secondary. My cerebral palsy is only one of the many complex and fascinating things that make up who I am.

I am not crippled.  I am not a gimp. I am not lame. I am not an invalid.  Separated out that word says in-valid.  My disability does not decrease my value as a human being.  Further, I am not a victim, I don’t suffer, I am not “stricken.” Rather, cerebral palsy affects my life.  In the same way, the fact that I live in the Midwest means that sometimes I have to deal with snow during the winter months.

I have a developmental disability in the context that I did not hit some developmental milestones at the same age as most of my peers. It took me longer to learn to crawl, and sit up by myself. I have never walked independently and I have always had to use some kind of mobility device to get from point A to point B..

Someone who uses a wheelchair for mobility is a “wheelchair user.” They are not wheelchair bound.  I have used some kind of wheelchair for as long as I can remember, but my butt has never had Velcro on it. Sometimes I sit in other chairs and I always transfer out of my wheelchair into my bed at night. I see my wheelchair simply as a tool I use that enables me to get from place to place.

The wheelchair that I use is called a power chair as opposed to an electric chair.  The reasoning is that the latter refers what happens to criminals on death row.

There are some people in society who have intellectual disabilities. The use of the word “retarded” is NEVER appropriate under any circumstances.

I like to think I am special in the sense that I believe every human being on the planet is unique, and all of us have various strengths, weaknesses and ways we view the world that make up both who we are and who we want to become. I don’t think I am special just because I happen to live with a disability.

Finally, just relax.  Most people with disabilities that I know are pretty chill.  Nobody, in my opinion, is going to be outrageously offended if you say things like “See you later” to a person who is blind or “did you hear the latest news?” to someone who is deaf. Most likely they will think that is pretty funny.

You have my word.

 

 

 

 

Posted in communicaiton, communicating respect, Deaf, disability etiquette, empowering language, handicapped, how to help, inclusion, Making Changes, negative perceptions, Parking Signs, Power Wheelchairs, Quotes, What some people don't think about | Tagged , , , , , , | 2 Comments

What’s Your Chocolate Cake?

chocolate cakeI am a big fan of TED talks.  That is Technology, Entertainment Design talks.  Not all of them, mind you.  Anything over about 15 minutes has to work hard to hold my attention.  But every once in awhile I do a random search on YouTube and scan possible videos about subjects I am interested in.  TEDx talks are particularly intriguing.  They have a limit of eighteen minutes, so they tend to be right up my alley.  Who knows when I will learn something new?  And I am always up for that.

It was with that kind of energy that I was searching YouTube when I came upon the video a few months ago by Haben Girma, according to the BBC “Women of Africa” series, Ms. Girma was born in the United States after her mother fled Eritrea as a refugee in the early 1980’s.  She was the first deaf-blind person to graduate from Harvard Law School.

In 2014, Ms. Girma gave a TEDx talk (a self-organized TED talk out of Baltimore) about lawyers in public service.  In that video, she describes the circumstances that led to her desire to become an attorney.

She received her Bachelor of Arts degree in Anthropology and Sociology from Lewis and Clark college.  While she was a student there, she lived in the dorms for two years, and therefore, ate all her meals in the cafeteria, where there were five food stations.  When she started classes, she asked that staff from the dining services office email her the menus each week so that she could put them in the screen reader on her computer.  That way she could transcribe the menus into Braille.  It was a good idea, and the staff agreed, but they regularly forgot to follow through. They offered to read her the menu, as they had for other blind students in the past, but they didn’t put together why that wouldn’t work at first.  Ms. Grma cannot hear what was being read to her.

She recounts that she tried to talk to the cafeteria manager several times, but was all but dismissed.  He told her, pretty much, that emailing her the menus from the cafeteria on a consistent basis was too much of a hassle for the staff, that access to the menu was too trivial an issue for him to be concerned about.  He suggested that she should simply “appreciate” that she had meals served to her every day.

With that, as many college freshmen would, at each meal she simply went to whatever station in the cafeteria she got to first, and settled for whatever food was served to her.  In her words, this method of doing things led to many “unhappy surprises.”

Over time, she made friends on campus and often shared meals in the cafeteria with her fellow students.  It was in this way that she learned that sometimes the cafeteria served chocolate cake, and Ms. Girma thought “I love chocolate cake.  And when there is chocolate cake at station 4 and nobody tells me, I am not feeling very appreciative.”

This discovery lead to her having a decision to make.  Was this “fight” worth the effort?  She remembers thinking “It’s just chocolate cake, right? Who am I to complain?” Then, as she thought through the issue, she realized that she had paid the same amount of money to be on the meal plan at her dorm as the students without disabilities had, and if they had choices about what they wanted to eat at meal times then so should she.  Access to menus was something she deserved.

Research taught her that having cafeteria staff email her menus was a reasonable accommodation under the Americans with Disabilities Act.  Armed with the facts, she went to talk to the cafeteria manager once again, as she had so many times before.  This time, however, she said: “If you don’t start emailing me menus consistently, I will sue you.”

Learning what the Americans with Disabilities Act required changed the attitude of all the staff members who worked in the cafeteria.  She had the menus regularly emailed to her from that point on.

Ms. Girma said that because of this experience she “was excited to make the world a better place for other students with disabilities.”

After graduation, Ms. Girma attended and graduated from Harvard Law School, and was recognized by the White House as one of their Champions of Change.  She now works as an attorney for the non-profit group, Disability Rights Advocates in Berkeley, California.

I was incredibly inspired by the accomplishments of this woman as she described this chain of events in her life.

The story she told had one question rolling around in my head long after the video was over.  It’s a question I would ask to the audiences I speak to, as well as my closest friends.

What is your chocolate cake?

What things are you missing out on because you don’t want to rock the boat?

Are you willing to settle for less than you deserve in the name of not making waves?  What will the personal cost for that be? Are you willing to risk it? How much better would your life be if you got all the things you deserved that were readily available to you?

Advocacy is no stranger to me, and I have had far too many people in my life tell me to appreciate what I have instead of fighting for what I want.

And all I can say is, I agree with Ms. Girma.  Coupled with a glass of almond milk, chocolate cake tends to be pretty darn tasty.

Posted in Ableism, Accessibility, Accommodations, ADA, Advocacy, Attitudes, changing perspectives, disability etiquette, Making Changes, What some people don't think about | Tagged , , , , , , , , , , , | Leave a comment