Disabled woman sitting in a wheelchair.

Ah, disabilities. Whether acquired upon birth or sometime during our lives, some people look at us with curiosity, pushing it as far as pointing fingers. Some offer to pray for us (why?) or avoid us, because who knows, maybe it’s contagious? Not many able-bodied people seem to treat their peers with disabilities as, well – “normal people.” Maybe it’s because they don’t know just how similar we actually are? Well, fear not, because I’m going to give you a little bit of an insight into how we see the world.*

*Do keep in mind these are points I have thought of. If you asked every disabled person in existence, I’m sure you would get many different answers. Nevertheless, here we go:

1. We’re disabled, not contagious. Touching us won’t give you the same condition we have.

2. Our disabilities aren’t the only things that make us who we are. Some of us have pretty amazing things going for us. A friend of mine runs a YouTube channel where she posts content about beauty-related topics, another one travels the world for wheelchair dance championships, and they are just two examples. The point is, if you look past our disabilities, you are sure to find lots of interesting stuff.

3. Asking before you come up to help us means the world. I’m not talking about when we physically fall down and you help us get up – that’s really nice. But when we’re in a situation when moving is harder – if we’re in a wheelchair, for example – please ask if we need help and where we want to go. Shoving us somewhere without even thinking if that’s where we wanted to go is incredibly rude. People with disabilities are not pieces of furniture. We know where we’re headed; please don’t try to read our minds.

4. We might need time to open up to you, but it’s worth it. In many cases we have been in situations when we were excluded from some kinds of activities our peers participated in. And sometimes we might think that’s the way it’s always going to be. Personally, I needed a lot of time to find a group of people at university who made me feel like I belong. But it was worth the search. If you know a disabled person at your university, school, work or anywhere else who doesn’t seem to be talking to anyone, be the first one to start a conversation. You might think it’s not much, but it can really make someone’s day a lot better. And maybe both of you will make a new friend.

5. Some of us actually have a sense of humor. Newsflash: we even joke about our disabilities sometimes. Of course, not everyone is this laid back, so you’ll need to test the waters first. But we can honestly be hilarious sometimes — give me a glass of wine and you’ll see. Twenty minutes in I become a giggly mess, and since laughter can be contagious, you’ll probably become one as well.

6. We are sexual beings. Surprise, surprise! In terms of sexual/romantic attraction and gender we are as diverse as everyone else. We experience sexual attraction, and we aren’t only straight and cisgender. Yes, LGBT+ disabled people exist; one of them has written this text you’re reading!

7. We weren’t born to be your inspiration. This might seem like something completely obvious, but I think everyone would find it a little weird if they were out and about doing the things they usually do and suddenly someone walked up saying how much of an inspiration they are. Honey, just… No. Of course, there are disabled people breaking stereotypes every day; those who climb mountains, give motivational speeches and give hope to others with every word they utter. But not every one of us is that way. Some of us are simply… coping. Living. We on not on the brink of life and death, where every “like” gets us closer to “getting better,” nor are we motivational speakers. We are people, and we have problems like everybody else.

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The dictionary defines “normal” as conforming to a standard: usual, typical or expected. As a middle school teacher and before becoming a mother of a miracle child with spina bifida, I lived a “normal” life, in a “normal” house, had a “normal” job and “normal” family. I never thought too much about the word, and the use of “normal” part of my vocabulary.

After I learned my daughter, Agatha, had spina bifida at our 20 week ultrasound, my life was no longer “normal.” I was scared to leave my “normal” existence and enter into the realm of the unknown; the life of raising a child with spina bifida. I feared the future and what it meant for my baby girl. After being told by my first doctor to terminate my pregnancy, my world went from “normal” to chaotic. That evening — after diagnosis and bleak understanding about spina bifida — my family came together. We cried together, we rallied together, we prayed together and we were welcomed into the most supportive community: the spina bifida community.

That night, I knew in my heart Agatha would live a happy, healthy life unlike what I was led to believe by my doctor. I knew what I thought of as “normalcy” had come to an end. I began to network with families of children with spina bifida and met with doctors who specialized in spina bifida care. While I still feared the unknown and the fact that my daughter would require major surgery 24 hours after her birth, I knew my new life was going to be filled with joy and hardships, challenges and triumphs, setbacks and small victories that would forever change my life.

After giving birth to Agatha at 11:55 a.m. on April 19 , 2016 via c-section, “normal” was no longer in my vocabulary and no longer part of my life. Agatha spent the first 27 days of her life in the hospital while undergoing four lengthy surgeries; anything but “normal.” I was not able to hold my Agatha until she was 12 days old; once again anything but “normal.” When Aggie returned home from the hospital, she immediately began occupational therapy and physical therapy four days a week. Moreover, we had doctors appointments every other day; far from “normal.”

As I began to adjust to my new life as a mother to the most resilient and miraculous child, I found happiness in my new life. I did not want “normal.” I did not need “normal.” I began to question, what is “normal?” And who would ever want “normal?” Agatha is my everything — my heart, my soul, my inner strength. She does not conform to a standard, she is not typical, she is not usual. She is Agatha, and that is all she ever needs to be.

My family celebrates and cherishes every milestone she accomplishes no matter how small. No one speaks of her delays — rather, we find solace in her strength, perseverance and dignity.

“Normal” has ended in my life. “Normal” has reached its maximum level of existence. Instead of “normal” we need to celebrate uniqueness, differences, individuality and exclusivity. In the diverse world we live in, no one is “normal” and no one should want to be “normal.” Ending “normalcy” brings out true character and specialties that set us apart from one another. Here is where I believe we can find happiness as we release ourselves from the confines of “normal.”

Are you ready to end “normal” and embrace your new existence?

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Thinkstock image by: GeorgeRudy

As a person born with spina bifida, I could have been labeled as a disabled kid. I don’t actually remember anyone ever saying the word “disabled” when referring to me, though. I have been thinking about that a lot lately and I truly can’t think of a time when someone called me “disabled” until later in life.

Of course, I knew I was in some way different because I clearly couldn’t walk. I never believed I couldn’t do anything I wanted to, though, because no one ever told me I couldn’t. I would play outside like any other kid — I just didn’t use my legs to get from point A to point B. I used a wheelchair or handcycle and sometimes just crawled.  I even had a dog that would let me ride him. I would push myself through the woods around my childhood home. Usually, I would go until I got stuck and had to get out of my wheelchair and drag it out of some sticky situation. That didn’t stop me from continuing, just changed the path I chose to take.

I have chosen to take a lot of different paths in life, and not once have I ever wondered if it was possible. I wondered how I might make it happen, but I always knew there would be a way to get there. I have had the opportunity to fly airplanes, skydive, paraglide, downhill and cross-country ski, play wheelchair basketball and most recently climb big walls in Yosemite.
I wonder if someone had said to me “you are disabled and you won’t be able to do many things,” if that would have changed my perception of my abilities.

I started thinking about this idea of labeling in earnest about two years ago when I was in Yosemite National Park attempting to climb my first big wall. I was sitting in the cafeteria and saw a bird outside the window. It seemed like fate that the bird had landed right next to the window. This bird, you see, only had one leg. I instantly thought to myself no one has ever told that bird it is disabled. As I watched the bird, I noticed it was doing everything else the other birds were doing, but on one leg. It still had the ability to get around by hopping. It was able to eat and make bird calls and definitely could fly — all the things a bird does in a normal day.

And there is that word normal. Does anyone actually know what that means? Could it be that this bird was living its normal life and I am living mine? This bird didn’t know it was disabled — it just kept living its life and doing things the way it knew how.

After that day, I kept thinking about that bird. I wondered, if someone got injured and was now going to live a different normal, would it be better if the doctor in the rehab said to them “What is your favorite thing in the world to do?” After they answered, the doctor could say “Let’s figure out how to do that.” This may give the newly injured person a goal to strive for instead of assigning them a label society often associates with helplessness, being institutionalized, and being unable to do things.

Being a disabled athlete, I have many friends who live differently but still are able to do everything they want to in life.  But why do I have to use the label “disabled athlete?” Why can’t I just be considered an athlete? I realize athlete is also a label, but do you get a different picture in your mind when you think about an athlete as opposed to a disabled athlete? I bet you do.

When we use labels it can automatically bring to mind certain prejudicial images of how someone should act, look, or many other attributes. When we call someone “disabled” or any other label it may also bring these things to their mind and in some way, they may start living as if they are that label. They may think that label defines who they are.

I don’t believe anyone can be completely defined. We are ever evolving. Five years ago I had no thought of being a rock climber, then I decided I wanted to try it. Now, one of the many labels you could use to describe me is rock climber — but that is not who I am. I am Enock, a person who has many interests, talents, likes, dislikes, personality traits, and a plethora of other labels that could be given. I will never just be one thing. Yes I have a disability and you could call me disabled, but that label doesn’t bring with it the same connotations you may have in your mind when you use it to describe me.

I wonder, if next time you see a person who is different in some way, what if you just saw them as a person? What if you forget the labels and just say “Hi, how are you?” and let your perceptions form from there. Would we all realize we aren’t that much different, but just living differently?

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As a person who has been disabled my entire life due to spina bifida, I have found I have a different idea of what being independent means to me. I have a lot more friends who have become disabled due to injury than those who have been born into it. As I have spent time with my friends, I have noticed they seem to be adamant about doing things on their own. They will even struggle to do something when help is nearby and could easily be acquired to make the task much faster and easier.

Don’t get me wrong, I am all for doing everything I can on my own, but I also believe that part of being independent is knowing when you need help. I sometimes wonder if people who are injured and go to rehabilitation are preached to so often about being independent that it becomes ingrained in them that they shouldn’t ask for help, no matter the circumstances. I believe this thinking might hurt as opposed to help people. If someone feels they need to do everything on their own and are unable to ask for help, they may decide not to try something in life just because they can’t quite do it on their own.

I am a member of an adaptive ski race team, and the coaches often push us to be as independent as possible. After all, we are supposed to be high-level athletes if we are competing in a sport. I definitely agree we should try to do things on our own, but I also think sometimes there are instances when getting help is safer and wiser. For example, riding the lift by myself, which I have done and am capable of, seems like a bad idea. If something should happen, I have no one there to assist me. If there isn’t anyone to ride with me, I can do it, but I don’t think it should make me seem less independent if I get assistance.

Another instance happened when I was stopped at the bottom of a hill in my ski through no fault of my own, and I asked for a push to the top to save my shoulders and arms. I knew I would be skiing the rest of the day and the next day and didn’t want to risk wearing my arms out and missing practice time. There was an able-bodied person there to assist, so I took the assistance. I was told I should be able to do it on my own if I am on the race team. I can do it on my own, but I chose not to for the reasons I explained.

When someone is telling me I should be doing everything without assistance, I want to ask them about their own life. Have they done everything on their own, or did they have help to get where they are? Have they never asked for help carrying groceries or taken their car to a mechanic to be fixed? Everyone needs help now and then, and we should all feel empowered to know when and where we need help and when we don’t. It should be our decision to ask or not.

I would not have had some amazing experiences in life without asking for help. I have reached the summit of El Capitan and Washington Column in Yosemite National Park, Cathedral Ledge in New Hampshire, completed marathons in my racing chair, skydived and learned to fly airplanes. Throughout all of these achievements, it has taken tremendous help for me to get to the end goal. I have had friends guide me up rock faces and carry me back from the summit, I went skydiving tandem, I had an instructor teach me to fly and a coach help me train for racing.

I know there is a time and a place for helping and for allowing a person to figure things out. But I believe we should allow the person struggling to make that choice. I have been offered help many times and turned it down because I was doing something I knew I was capable of doing. I have also accepted help when I knew that getting to the end goal was more achievable.

I believe if we all worked together and helped one another, the outcome would be greater than if we all stay individuals and fight the current of life alone. When we all come together with a common goal, great things can be achieved.

My hope is that we can encourage one another to lend a hand when needed, but also have the choice to go our own path when we desire.

I would love to hear others’ views on what independence is to them, and stories of when they got help or when they didn’t need it.

Follow this journey on Go Beyond the Fence.

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2017 is a very exciting year for me, but goodness has it started on a low, having lost an incredibly special member of our family. My Granny recently left this world, aged 90, after a 10-year battle with dementia – she fought a very good fight and is now at peace, no doubt drinking some sherry with Poppa, the love of her life!

As one does after losing someone special, I have spent a lot of this week reflecting on Granny – the wonderful person she was, the good times we had and the things she taught me growing up. The wisdom she shared with me is incredibly pertinent for the stage of life I find myself in, and there is one particular nugget I wanted to share.

“Life is not a competition, Emily. We all come into and leave the world in the same way. What matters is how well you live your life and the difference you make in your corner of it.”

Throughout my life, Granny has acted as a sounding board for everyone in my family. A gentle lady with a backbone of steel, she would tell you things exactly as they were. There was no mincing of words! I remember a conversation I had with her many years ago (although I can’t remember the original context) where she said that life was not a competition and that regardless of what a person does or doesn’t achieve in life, we all come into and leave the world in the same way. We are all equals.

This nugget of wisdom is particularly relevant for me right now as I have recently made what feels like a very big decision. In a week’s time, I will be going part-time at work. Now dropping down to four days may seem inconsequential to many people (and even desirable for a large number of us!) but it is a decision I found very hard to make. Having spent a large proportion of my life trying to do the best and be the best, in a way “proving” to people that I could hold my own in mainstream life as a disabled person, admitting that I could no longer keep up this pace felt like failure. But as Granny said once, “The only person who loses when you compare yourself is you. One sees the best of the other person and compares it with the worst of yourself.” What a wise woman she was.

If Granny had been able to talk in the last few years, I know what she would’ve said in response to my worrying. She would’ve told me to stop being so silly! Admitting that I need to slow down, step back and take care of myself is not “failure,” it’s choosing the type of life I want to live, particularly given the specific set of difficulties I face. It’s listening to my body and doing what is best for me and for my family. It in no way represents defeat.

If you speak to a number of different people including my doctors, it is pretty miraculous that I’ve survived three years of full time work without any huge dramas. If you don’t count multiple pressure ulcers because of time on my feet, feeling chronically tired, severe pain, multiple kidney infections and a pseudo-aneurysm as huge dramas, that is!

Granny would’ve said that making this decision is wise. It gives me back my work-life balance and means I can feel like I’m doing things well, both at work and at home. Rather than putting 100 percent into my professional work and feeling sub-par in my home life, I will be able to find the all-elusive balance and enjoy the excitement that is my personal life in 2017 as well as being a great Speech and Language Therapist. After all, life is about being the best person you can be, in all that you do.

I must also point out how lucky I am to have an incredible family and an amazing fiancé who have supported me in this decision. My fiancé has not once complained about the financial challenge this will pose for us, but has instead encouraged me, stating that a happy and healthy Emily is far more important than any wage. He told me that while it feels I’ve lost the full time work “battle,” it does not mean I’ve lost the war against the difficulties my disability poses on a daily basis.

This decision is about accepting myself the way I am and doing what is right for me. After all, life is not a competition. I don’t have to keep up with the Joneses. I just have to do my best and be the best version of myself that I can be. Although 2017 will be tinged with sadness, I can’t help but celebrate all that Granny taught me and all the next year holds. I’m eight months from becoming a wife — and that is certainly something to celebrate!

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Thinkstock photo via Wavebreak Media.

As a person living with spina bifida, challenge is part of life.  Although people may see me in a wheelchair and think I have it harder than others, I think everyone has challenges in life. It’s how we face them that really matters. I could just as easily have said “I don’t want to deal with this” and stayed home. Instead, I choose to face challenges and even find challenges to face.

I suppose my affinity for challenge really started when I met my physical education teacher, Bob Dyer, on my first day of junior high school. Each class he would push me to try things beyond what I thought possible. He became a driving force in my life, and with each challenge he presented I said “yes” and met it head on. He never expected anything less of me.

One day he challenged me to try the pegboard, which is basically a flat wood panel with holes in it and pegs that fit in the holes. The idea is to “walk” around the board only using the pegs to go from one hole to another. He told me to go for three times around the board. Of course, me being who I am, I said I will do eight. I still hold the record for the most times around the board to this day. It was a really cool feeling to have my name up on the record board, especially being the only wheelchair user in the school.

We also used the gymnastics rings in class, and one day he suggested I try doing the iron cross. This move consists of putting my arms out straight while hanging from the rings. I managed to do it, but my shoulders were on fire. Meeting that challenge showed me that I really was capable of doing things beyond what I thought possible.

His first big idea outside of physical education class was to take me downhill skiing. The first year we went to Maine Handicapped Skiing, which is now known as Maine Adaptive Sports and Recreation. I met Jay Germaine and Andy Barlow, who are both sit skiers.  They were my instructors that week, and introduced me to the mono ski. I had a very frustrating week. I started out on the magic carpet which is basically a conveyor belt that allows a person to take very short practice runs and then ride up again.

I remember not liking Bob much that week when I was falling and eating snow. As with all my challenges, though, I faced it head-on and tried my hardest to put all the instructions I was given into practice. By the end of the week, I was actually riding the lift and making turns. I have now been skiing over 20 years and just bought my own mono ski.

At the age of 15, Bob got me into wheelchair racing. I got my first racing chair with the help of a sponsor and started pushing myself 20 miles a day, 7 days a week as the weather allowed. I would come home after school in the spring and throw down some food, jump in my chair and head off. I would push myself the 10 miles back to school and then home again. There was a hill about 5 miles into the trip that was about a mile long and very steep. I lived for pushing this hill because I knew the thrill ride I would get on the way back. On my way back, I would sit at the top of the hill, look both ways to see if the coast was clear, and then push for all I was worth. I managed to get up to 56 miles per hour the first time, and when I got to the bottom my arms were shaking. I was scared but exhilarated at the same time. After that I was hooked. I couldn’t wait to do that hill every day.

Fast forward to recent history. Over the past few years, I have increased my level of challenge.  I began rock climbing and just completed my first ascent of El Capitan in Yosemite National Park. I don’t want to give too much away about that experience, as there is a movie coming out very soon that will illustrate it perfectly. Let me just say that when most people hear I did 4000 pull-ups, they focus on that as being the hard part.

For a person with a disability like mine, the hard part of rock climbing is daily living activities. Performing tasks such as getting dressed or using the bathroom in a space that is about 4 feet by 8 feet is much harder when you are unable to stand up. You are using up most of the space with your body just sitting on the porta-ledge, so everything requires much more planning and effort. When the movie is released, everyone will have the chance to see what the experience was like.

I guess you could say I am happier and more alive when I am facing a challenge. It is like an energy boost comes over me and I push myself to overcome whatever I am facing. I said “yes” to each challenge over my life and it has given me a sense of accomplishment and satisfaction each time.I would encourage you to say yes to challenges and face them as I have. I truly believe you will find out things about yourself you never thought possible, and it will enrich your life more than anything else.

Follow this journey on Go Beyond the Fence.

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