A Thank You Letter to Uncle Steve

It’s Thanksgiving time. A time to give thanks for our family, our friends, our happiness, our freedom, and our health. This year my health has monopolized the majority of my attention. The decline in functioning and increase in medical needs I have experienced this year has resulted in life altering events. Surgeries, medical procedures, tests, therapy, medical equipment, and a pile of medications have been my reality. I have gone from being a successful, working professional to an unemployed person fighting for disability benefits, and fighting to stay ahead of the ever changing symptoms wreaking havoc on my body. It is safe to say that I am in the worst shape of my life. After losing my ability to work, having my financial stability hanging on by a thread, and being in the worst pain and misery in my 33 years, I would have thought I would be a very unpleasant person to be around. In reality, however, I am happier now than I have ever been before. There are many people who have helped me get to where I am today; without the support of my husband and my parents I would not be the woman I am now. However, I have to give thanks to uncle Steve for teaching me the vital skill of how to live happily with a chronic, debilitating disability. Without his guidance I don’t know that I would have been prepared to take this journey.

As a child I was strong, energetic, and full of life. When I was with you, you were the weak one, but you never let that slow you down. You taught me that no matter what your limitations are you can still be active and productive, and follow your dreams. I remember going to the zoo where you volunteered- teaching people about snakes, and joining you at the Muscular Dystrophy camp where you were a mentor to so many of the younger campers. I remember going to the lake and fishing, boating, and frog hunting. I remember picking raspberries, and holding you as we traversed down the steep, rocky hill so you wouldn’t fall out of your wheelchair. We had so many adventures together; too many to even think about listing. I also remember those serious, late night talks we would have while eating Double-Stuffed Oreo cookies that you had me sneak out of Grandma’s kitchen because your medicine left a bad taste in your mouth. (Mine does that too.) I cherish those moments the most.

As I grew older you grew weaker. I watched as your life became more and more fragile with every passing year. The hospital visits became more frequent, and the nursing staff and doctors came to know us well. There was always a party when Steve was on the floor. Even in your weakest moments you showed grace and humility, and the utmost patience. You relied on so many people just to survive each and every day, and you humbly accepted the help you were given, forgave mistakes, and patiently waited if your needs could not be met right away. Through it all you had a smile on your face, and were always ready with a good joke to lighten the mood.

Neither of us knew it at the time, but all of these experiences were life lessons that would play a vital role in my future happiness. Nobody had anticipated that at the age of 16 I would begin to show signs of some sort of disability, starting me on a downward spiral into a medical nightmare, to find out in the end I too have a neuromuscular disease. How I wish I could have had you there with me through that painful struggle of finding a diagnosis. How I longed for someone who could remotely understand how I felt. How I hoped I would find someone to talk to who would listen, truly listen, but by that time you were already gone. I didn’t have the insight early on to be able to look back on all the lessons I had learned from you, but as I grow older I am able to fully appreciate the experiences we had together, and better learn from them.

538390_10151210425023832_2034447263_nOver the years I have come to understand the importance of having patience (because we all know that in the medical world nothing moves quickly). You always showed patience with your medical staff. I am doing my best to be patient like you. From you I learn how to speak up for what I need, and educate my doctors because sometimes I am the expert on my disability. Your case was so unique that many times you were in the same situation. You teach me how to advocate for myself with poise and dignity. I have a hard time admitting I can’t do something. You didn’t have that option. If you didn’t ask for help then you didn’t get out of bed. You remind me to be more humble and ask for help when I need it. And most importantly, you have let me know that it is ok to just be me, and that being me is perfect. You instilled in me the understanding that regardless of a person’s disability, we are all still worthy and able to make a difference. You teach me not to worry about what anyone else thinks, and to just be me. All of these things you did without even knowing you did it. You did it by just being you, and by being a great uncle, mentor, and friend. Now that I have my diagnosis the healing can begin. My disease can’t be cured, and my symptoms may get worse, but I will be happy because you have taught me how. I can stop fighting and start living again, and with the skills I learned from you I can finally be free.

It has been nearly 18 years since you passed away, but you remain in my heart and my mind always. I remember the day clearly, and I knew you were gone before my parents even told me the news. We had a unique bond that differed from your relationship with my brothers. Ours was special, ours was a bond that was deeper than words can explain. You may call it fate that we bonded as we did. I look back on our relationship and I am grateful for everything you taught me about how to live with a disability. It has been a long journey, but you have been with me through it all. The memories of us have helped push me through the hard times. It has been a struggle, and will continue to be challenging, but I know that I have the skills I need to make it through.

I never got the chance to say good-bye, but that is ok because with a bond like ours good-byes are not needed. You are always in my heart and will always be with me. I do miss seeing you though. I want to thank you for spending the time to teach me what I needed to know to live successfully with my disability while we had our time together. I will continue to try to help others in need of support or guidance because, as you said,

“If part of what I’ve learned about living with a disease- an illness- can benefit other people or change the way they look at people with an illness, then it makes what I do worthwhile.” (Steven Arnold 1968-1998)

Even though this disability is a Major Payne, I will live well and Die Hard, and continue to support research for The Cure. (Three of our favorite night time movies to watch together.)

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Me, Uncle Steve, and Great Grandpa at the MDA Telethon: Steve showing me how to answer the telephones.

 

Vote for Change


Today is Election Day 2016. It has been an epic Trump -vs- Clinton battle during this campaign. The country seems divided, media bias has fueled anger and hostility toward each candidate. People with disabilities have been highlighted multiple times throughout the campaign on both sides. How have those stories affected your vote? 

I may get some negative feedback from this post, but I believe this is something that needs to be said. First and foremost I need to say that I do not particularly endorse either candidate. I feel that both candidates have some positive and MANY negative qualities, but neither is necessarily suited to be the next president of the United States. That being said, media coverage of this campaign has been extremely biased, and I feel it has been overly biased when it comes to discussing disability issues. 

Most recently, there was a story of a 12 year old boy with cerebral palsy who was asked to leave a Trump rally. News stories headlined that “Donald Trump ejects 12 year old boy with cerebral palsy from rally”. This headline makes Mr. Trump look like he went up to a small child in a wheelchair and threw him out of his rally for no reason. It is unfair to paint that picture when in reality the boy and his family were there to protest the rally, and were disrupting the event. Mr. Trump had them removed by security just as he would any other protester who was disrupting the event. 

Now you can’t tell me that if the same thing happened at Mrs. Clinton’s rally she wouldn’t have done the same thing. In reality, Mr. Trump acted in a way I want a leader to act. He didn’t parade a poor little kid in a wheelchair across a stage with a sad little story about his life to get sympathy votes. (Can we say the same about Hillary?) He treated the kid in the wheelchair like he would any other citizen. He treated him like an equal, and that is what we have been asking for. This is just one example of how people with disabilities have been used in the media to sway the people’s votes this year. 

With regard to the allegations of how the Trump supporters reacted to this individual, I am ashamed. Our society should be better than that. We all have the right to express our opinions, but we don’t have the right to resort to violence or personal attacks. Kicking someone’s wheelchair is the same as kicking the person. The wheelchair is an extension of the person, and any attack like that is uncalled for. You should be ashamed of yourselves. I am happy that this young man is getting involved in current events, and my hope is that this event does not deter him from continuing his involvement. 

When you vote today make sure you vote for the right reason. There has been so much hate, racism, lies, and bias swimming around in our media. Don’t allow your heart to absorb all that negativity and change who you are. Whether you vote for Trump or Clinton or someone else, do it because you believe it is the best choice for our country, not because the media or anyone else told you to. 

No matter the outcome, we will still be Americans come tomorrow, and we will still be facing the same issues we face today. We need to come together and make the changes we wish to see ourselves. We cannot rely on one person in a big White House to fix everything. It is up to us to make the changes. Vote for change in America regardless of who you vote for president. 

Don’t Let Your Job Define You

When You Fear Losing Your Identity When You Have to Stop Working Due to Your Disability

“Nice to meet you. What do you do?” That question is asked so many times in our society that it has caused us to identify ourselves by what we choose to do for employment. But what if you cannot work? How do you identify yourself?

This is a question I have been struggling with for a while now. I have been in the professional world for over 10 years, and I have worked at least part time since I was 15 years old. With a master’s degree, I planned to be a working professional until I retired. However, my disability appears to have other plans for me. Now I must come to terms with the fact that I may not be able to answer the question, “What do you do?” much longer. Who am I? What will I be then? Just another person with a disability? Is that what defines me now?

The disabled world has been a part of my life since birth. Not because of my own disability, but because of family members. I grew up with an uncle and two cousins with spinal muscular atrophy type II. I remember the many years of volunteering at the local MDA Telethon every Labor Day weekend. I visited the MDA camp every summer with my uncle as I got older, and met multiple friends. It is there where I met my future wheelchair basketball coach, who was also a counselor there. At age 16 I became a counselor at the MDA camp; unbeknownst to me, 15 years later I would be given a diagnosis of mitochondrial disease, a form of muscular dystrophy.

I began volunteering for a children’s recreational rehabilitation program teaching adaptive sports to kids with disabilities at age 15, and when I began showing symptoms of my own disability, I too began playing wheelchair basketball. After graduation I went to college for social work. Once I graduated, I began my career as a mental health case manager working with individuals with mental illness. I enjoyed that career for five years before transitioning to therapeutic foster care working with children with disabilities in the foster care system.

I then transitioned to my current position as a probation officer after obtaining my master’s degree in Forensic Psychology. Here, I work with individuals with disabilities on a daily basis. It is astounding how many individuals with disabilities are involved in the criminal justice system. This system is not the right place for many of these individuals, and change must begin with an in depth look at our treatment providers, but that is a different topic altogether. After five years of service with the probation department, I have finally come to the end of my ability to continue. This has been a very difficult decision for me to make.

I must admit, I have always had trouble with the idea of being unable to work. I have helped so many people apply for and obtain Social Security Disability, but I have always thought it was something I would never do for myself. To be honest, part of me almost felt as if I was better than that. I felt as if I had the education and training to overcome whatever obstacle would come my way, and I would never be the person who would say, “I’m on disability.”

Even as a social worker, I have my own biases about people who live their lives on social security. Maybe it’s because I have worked with some people that I have felt were using it as a cop out. I will admit I have thought, “Well if I can work, why can’t you? Surely you can’t be worse off than me.” Maybe it was my age, maybe it was my inexperience, or maybe it was my subconscious fear of my own limitations surrounding work. I have come to realize that I am no more qualified to determine how disabled someone else is than they are to determine how disabled I am. A person’s disabilities are their own struggles that nobody else can fully understand.

I worked until I could work no more, and then I worked some more. I was in denial, and I pushed myself to the point of exhaustion. Sick days became more frequent, productivity became slower, mistakes happened more frequently, and I was reaching my limit. More and more symptoms began arising,  and my symptoms were increasing in frequency and intensity. I had to make a decision, and that decision was I could no longer return to work. The paperwork for long-term disability was started. The application for SSDI began. I had become one of my former clients. What was happening to me? I was losing my sense of self. I was losing my purpose in life. Who was I now? How do I answer the question, “What do you do?”

I’ve come to understand that our society has placed value in the wrong place. We need to focus on the person, not what they do or what they can do. I have bought into the idea that my job defines me for many years. I have pushed through pain and suffering because of the fear of losing my identity if I am not working. I would be a failure. I would be giving in to my disability. I would be nobody. These are all thoughts I had, and sometimes they still pop up every now and then.

It took a lot of soul-searching and support from my husband to finally come to terms with the fact that listening to my body and understanding my limitations is not giving up. I lose no part of myself by not working, because my job does not define me. I am not my job, I am Me. I am a loving wife, I am caring, I am an animal lover, I am adventurous, I am funny, I am family-oriented. I am Me, and nothing can change that. My job and my disability are only parts of my life; they do not define me. Don’t let any single part of your life define you, just be you!

Embrace the Disability

Don’t think about what you can’t do; Excel in what you can do!

To embrace your disability is to embrace yourself, love yourself, and know that your are great.

I have met so many people who have told me they wish they would have just died. I’m talking about those who either become disabled due to an accident or illness sometime later in life. Most individuals born with a disability are able to adapt so much easier, and are able to embrace their disability as an integral part of them at an early age. This doesn’t mean they don’t have struggles, or have days when they may say, “I wish I could do that”, but overall, many children born with disabilities are much more accepting of themselves at an earlier age.

Now, we adults and older children, we are a different story. I will admit, I had my days when I thought, “It would be better if I wasn’t here”. The thought of not having to go through the daily pain, the stares, the negativity and the loss was appealing. The loss…. It is so difficult to go through the loss. The loss of what once was. The loss of who you once were. The loss of what you thought you would become. The broken dreams, the heartache, the reality that there are going to be things that I may never do again. These are all feelings that can lead someone to the level of despair that would make them say “It would have been better if I had died”.

I’m here to tell you that you are wrong!

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No matter what your situation is, it has a purpose. You have a purpose. You may be new to this disabled community, and that is okay. We don’t judge. We will embrace you and show you the ropes if you just let down your guard, break down those walls, and let us in. I know how hard it is because I was there. I put up those walls and I didn’t want anyone to know what I was going through. I wanted to pretend it was all okay. I didn’t want to accept it. I felt like a friend of mine does right now who always says, “If I learn how to do that, then I am giving in to this chair”. You aren’t giving in by embracing the wheelchair, the walker, the cane, the braces, the seeing eye dog, the hearing aids, the prosthetic, the depends, the catheters, the shunts, the implants, the sign language, and on and on. It isn’t giving in, or giving up. Learning to use the tools around you to live an active, healthy life is just part of the process of learning to love yourself again. You must learn to love you, and that means every part of you. You can’t be embarrassed about who you are and what your needs are. The people who truly love you don’t care about the chair, the catheters, the dogs, the hearing aids, the braces, the depends, etc. They don’t care, and you shouldn’t either. It took me a LONG time to learn that. After I learned to embrace it I realized that I was the only one holding me back because everyone else had already accepted me.

At some point we all need to learn to let go of what we once were, and learn to love who we are now. Embrace all that we are because what we can be is amazing. I have met so many amazing people because of my disability. My disability has opened the door to an entire world that didn’t exist for me before. It has made me a better person. I can relate to my relative who I loved dearly who went through similar struggles and did amazing things. I can better understand how he felt on some level, and maybe carry on his legacy of helping others. I have been able to reach out to children who are struggling just as I did, and I have seen them conquer their struggle while learning to embrace their disability.

I have met so many people who have been injured, or have a debilitating disease that began later in life, who have told me if they had a choice to go back to who they were before they wouldn’t. They have embraced their new identity, and they have learned that there was a reason for it. They have seen the good things that have come from their experiences, and they don’t want to change it. It took some of them years to come to that realization, and some of them went through very dark times before they got there. Unfortunately, being in that place of despair can lead to so many dangerous things such as alcoholism, substance abuse, risky behaviors, depression, and suicide. We need to come together as a community and help each other through that difficult time so the transition isn’t so difficult for the next person. These individuals who have learned to embrace their disability are necessarily happy with every aspect of their disability. Everyone has daily struggles that they must overcome regularly when living with a disability, and I am not discounting that. But, those daily struggles make us stronger, and over time you will begin to see the good things that will come from your situation.

I don’t know what my future holds. It is scary to think about what my disease could do to me. I don’t know how it will progress, but I do know that no matter what, I will embrace it and know there is a reason to live. Each and every one of us has to learn to let go of the person we thought we were going to become, and make a new future for ourselves. It doesn’t mean that it is an inferior future to the one for which we were previously on track, it is just a different one. One day, you may just come to realize that your new future is the one that was meant for you all along.

Support Networks

I consider myself to be fairly independent, but I will admit that I rely on my husband a lot. He is the best person in my life, and I owe a lot to him. He gives me strength when I feel like I cannot go any further. He helps me to take care of the house and other tasks that I cannot always handle. He has patience when I am not feeling well. He is strong, steady, and reliable. I know that no matter what he will always be there. Without him, my life would be much harder, and I would be without my best friend.

I think many people with disabilities have a special someone who they rely on for strength, encouragement, and help. What we don’t always think about is what we will do if that person is no longer able to help care for us. What happens if they become ill, disabled, or even pass away? We don’t like to think about it, but it is something we all need to consider. What will I do if he is suddenly unable to do what he does for me now?
Currently, my husband is recovering from surgery. Luckily, it is a simple surgery that will not cause any major issues, but it got me thinking, what will I do if he is unable to be here one day? You see, my husband has a dangerous job which requires him to put himself in harm’s way on a daily basis. When he leaves for work I never know if he will come home at the end of his shift. We aren’t in denial about this possibility, and we have talked about it often. We are both mentally prepared to make that sacrifice if necessary, but am I physically prepared? This situation has gotten me thinking. Will I be ready?

We all need a support system. We need a network of people, a community of individuals who can support us when needed. If you don’t have that support system then reach out. There are multiple agencies and networks out there to help individuals in need. If you are religious, seek support from your church community or your spiritual advisors. Make new friends through a community club or activity that interests you. It is never too late to make new friends, and these friends can be a significant source of support in times of need in the future. I have learned that once I was able to let my guard down a little it was easier to make true relationships that create a stronger bond. There is a certain type of family that comes with my husband’s job, and normally I would be the type of person that would not embrace that. I would typically shy away from others involved in that “family” because I would feel different or unacceptable. Since I have learned to let my guard down I have learned that there are people out there that are sincere, and I have formed some very strong bonds that will last a lifetime. I am confident that if, God forbid, one day my husband does not come home, that there are people in my life that I can rely on. Hopefully, you can gain that comfort and support as well.

#NoExcuses?? When is it OK to Say I Can’t?

Over the last few years the popular phrase “No Excuses” has become an overused inspirational quote which has been placed on multiple images of children and adults with disabilities performing various tasks that are meant to inspire and motivate people to never give up. These images have flooded social media, and have been commercialized as inspiration porn for able-bodied people to motivate them to achieve their goals because, let’s face it, no matter how bad your situation is, it couldn’t be as bad as the poor disabled kid in the photo, right? While I understand the initial intent of the movement of giving disabled individuals a voice to show that they are capable of doing anything that able-bodied individuals can do, I feel we have lost touch with what our goals are, and we have created a situation that has become a hazard for our disabled youth and newly disabled individuals. By saying “No Excuses”, we are essentially telling people with disabilities that they have no excuse for being unable to perform certain tasks, and this is untrue. Every individual, whether disabled or not, has an excuse for not being able to perform certain tasks at some point or another. We should not place shame on them for being unable to perform those tasks, but by popularizing the phrase “No Excuses” we are essentially condemning those who have excuses for being unable to perform.

Let’s take my situation for example. There are times when I am simply unable to walk any further, hold up my arm or sit in a chair any longer, etc. If I push myself any farther than that I risk severe muscle contractions and seizure-like symptoms which in turn result in days of recovery, or possibly a hospital visit. Now I could go along with the mindset of “No Excuses” and push on, but that would be damaging to my body and my mental health. Is it worth it? I don’t think so. Let’s consider the high school student who has Cerebral Palsy with severe spasticity in all four limbs. She wants to play in the band so badly, but cannot because she is unable to control her limb movement well enough to manipulate any of the instruments. We tell her there are “No Excuses”, but no matter how much she wants to play, there is no way she can will herself to be able to effectively play an instrument. Is she now a lesser person because she was unable to perform? If there are truly “No Excuses” then we are sending the message that anyone with an excuse is not as capable as someone else, and therefore not as worthy. What does that do to their self esteem? Sometimes there are excuses, and those excuses need to be validated. I wish I would have come to this conclusion when I was a young teenager playing wheelchair basketball. At that time, I bought into the idea of “No Excuses”. I pushed my body past it’s limit each and every game because I knew that if everyone else could do it I should be able to as well. I caused myself so much pain and suffering because I refused to listen to my body and set my own limits based on what my body required. I was afraid of being judged as weak or unworthy.

We have newly diagnosed, newly injured, and young children who look to us for guidance
on how to live with their disability. We need to teach them that having a disability is not something of which they should be ashamed. We need to teach them to embrace everything that makes them who they are, and to love all aspects of themselves. It is okay to say, “I can’t do that”. Someone who is paralyzed from a spinal cord injury is going to be unable to climb a flight of stairs no matter how much he or she wish his or her legs to move. The “No Excuses” motto is not going to work here, so they are going to need to learn to live around their disability. I’m not saying that if you have a disability then you should just accept that and lay on the couch all day feeling sorry for yourself. If you remember, I did play wheelchair basketball. Learn to adapt and do things a different way. If you can’t play regular sports play the many adaptive sports that are available. If you are unable to play any of those sports (or you just aren’t interested in sports), then find a hobby that interests you. Maybe you enjoy singing or writing, or maybe you wish to volunteer at your local animages-3imal shelter because of your love for animals. There are so many things you can do, but don’t think you have to push yourself past your personal limits just because mainstream society says you should.

I think a better motto that of Megan Bomgaars from the show “Born This Way” who says, “Don’t Limit Me”. By saying “Don’t Limit Me” she is saying, allow me to grow as much as I can, and support me in my choices and decisions in my life. She is accepting her disability and her limitations, but is asking that others not limit her capabilities. I would ask that the world not limit anyone with a disability, and allow each and every person to grow and learn their own limits and capabilities. When we take away the pressure of “No Excuses” we allow individuals with disabilities to freely explore their own capabilities, but also allow them the freedom to say, “I need help” without the stigma of feeling like a failure.

Why the Paralympics Should and Should Not be Inspirational

Is My Disability Your Inspiration?

As I sit here watching the amazing athletes in the 2016 Paralympic Games in Rio I’m reminded yet again of how inspirational we can be. Each and every one of these athletes are inspirational, and should be an inspiration to the many young athletes today who seek to one day claim their spot in the Paralympics. It is inspiring to me to see the kids I once played with and helped coach now as young adults playing in the biggest game of their lives, the Paralympic gold medal wheelchair basketball game, and WIN! Wow, what an inspiration. Never in my life would I have ever thought I would be able to watch such awesome cohesion in a team. I am also aware of another inspirational trait that was apparent throughout all the teams in the Paralympic games, and that was the incredible sportsmanship each and every player and team displayed. It is inspiring in these often troubled times of conflict throughout the world to see the encouragement shown by these players toward their opponents. It is ever important for us as individuals with disabilities to support one another regardless of what team we play on, because in the end we are all on the same team trying to improve awareness and support for individuals with disabilities.

All of these things are reasons to be inspired by the athletes in the 2016 Paralympic Games. However, many times unfortunately, they are seen as inspiring to the able-bodied community for the wrong reasons. In our society, disabilities are seen as a thing to be feared. Individuals with disabilities are often viewed as lesser beings, incapable of accomplishing the same level of success as an able bodied individual. Because of this, the Paralympics is less televised than the Olympic Games, and fewer people attend. The athletes do not receive the same kind of recognition from the able-bodied society as their able-bodied counterparts, and their accomplishments are often times seen as “amazing…for someone with a disability”. People are inspired not by the athleticism of these fine individuals, not by their hard work and dedication to their sports, but by the fact that they are disabled and yet still manage to play a game that nobody would ever think they could do, and isn’t that just nice… (sarcasm sign here for anyone who needs it.) In many cases, individuals in our society are viewed as “inspiring” for performing menial tasks just because they have a disability.

What the able-bodied world needs to understand is that people with disabilities are not inspiring just for doing everyday activities. When I go to the grocery store in my wheelchair to get more sugar, I am not inspiring; I am just shopping like everyone else. When a child with an amputated leg walks on a prosthetic, he is not inspiring; he is just walking like everyone else. When a woman who is blind goes to the library to check out a book in braille, she is not inspiring; she is just getting a book to read like everyone else. When a young man with Cerebral Palsy graduates from college, he is not inspiring; he is just educated like the rest of his accomplished classmates.

Yes, people with disabilities can be inspiring. Steven Hawkins is a genius, and has contributed so much to science and our society. He is inspiring. Christine Ha was awarded Master Chef in the third season of the hit television show, Master Chef, by Chef Gordon Ramsey for being an amazing cook (and she just happens to be blind). She is inspiring. Matt Scott is an American Paralympic Wheelchair basketball player who has two Parapan gold medals, was nominated for the Best Male Athlete with a Disability by ESPY Award, starred in a Nike commercial, and just helped his team win gold in the 2016 Paralympics at Rio. He is inspiring. Tatyana McFadden is a seven (7) time Paralympic Gold Medalist, 11 time IPC World Championship Gold Medalist. She won for America four (4) gold medals and two (2) silver medals in the 2016 Paralympic Games in Rio this year. With the humility and sportsmanship that every American wishes to see in an athlete, she is the definition of inspiring. These people are not inspiring because of their disability, they are inspiring because of their unique skills that they have developed through hard work, education, training, and dedication. They just all happen to have disabilities. Let’s stop focusing on the disability and start focusing on the accomplishments these amazing individuals have achieved.

Congratulations to all of the athletes in the Paralympic Games at Rio in 2016. It takes a true athlete to accomplish what you have accomplished, and win or lose, you have done your country proud. You are the best of the best. My deepest condolences to the family, friends and teammates of Iranian cyclist Bahman Golbarnezhad. Our thoughts and prayers go out to you.

Responding to Stereotypes About Disability and Relationships

Does Dating/Marrying Someone With a Disability Automatically Make You a Good Person?

My husband and I were talking the other day and he told me a story about an incident that occurred when we were dating over ten years ago. One day we decided to go to the mall. We were just shopping together in a store and I was looking at some clothes, and my now husband was patiently waiting (and waiting…and waiting…) for me to finish. Apparently I was preoccupied when a man approached my husband and stated, “You’re a good man”. Well, he was right; my husband is a good man. He is loving, selfless, funny, and as mentioned before, patient. But, unless he was clairvoyant (which would have been way cool), there is no way he would have known all of that. No, he was not speaking of my husband’s character, he was saying my husband was a good man because he was willing to be with me, a girl in a wheelchair.

Does dating or marrying someone with a disability automatically make you a good person? Absolutely not! I have known many people who have been in relationships with disabled individuals who were complete jerks. The idea that someone would, or should, only be in a relationship with a person with a disability out of pity is ridiculous. People with disabilities are more than just their disability. We are husbands, wives, mothers, fathers, teachers, doctors, lawyers, farmers, truck drivers, students, etc. We are just as capable of providing love and support to another as someone is to providing that to us, and we are equal contributors to our relationships. My husband and I have an equal partnership that is built on love, trust, and faith in each other. It has nothing to do with my disability.

People with disabilities are not a thing to be objectified, fetishized, or pitied. Anyone who is in a relationship with someone for such a reason needs to get out of it. Anyone who thinks that people with disabilities are not capable of being in a relationship for any other reason than these needs to be educated. You don’t get brownie points just because you are in a relationship with someone with a disability. We are people. We are people who want to be loved like everyone else. We are people who want to give love like everyone else. We are people who are capable of contributing equally to the relationship, and it is offensive to assume otherwise.

So to the man in the mall, I say shame on you. Shame on you for assuming that I need to be pitied. Shame on you for not believing I am capable of providing love to someone. Shame on you for feeling like the only relationship I could be in is with “a good man” who is willing to stoop low enough to date someone in a wheelchair. Shame on you for thinking I am worthless. I am a strong, independent, loving woman in a strong, loving, supporting relationship with my husband of over ten years. I am a good woman in love with a good man, and yes, I have a disability.

Please Stop Trying to Fix My Disability

In our society, disabilities are seen as things that need to be fixed, and, therefore, the person who has the disability is also viewed as broken. In reality, those of us who have the disability often celebrate their disability. We identify with our disability, and we see it as a part of ourselves. Without our disability, we would not be our complete selves, and in a sense we would then be broken. As a society, we need to stop looking at a disability as something that needs to be fixed. We need to stop asking the question, “what is wrong with you?” because in their eyes they may just be perfect.

“I will never complain about my foot pain again because you have it much worse than I ever do.” “I am thankful I don’t have to deal with what you do.”
“I would probably kill myself. I don’t know how you do it.”

Statements such as these are made to people with disabilities by able-bodied people regularly. What able-bodied people need to realize is that these statements are offensive for individuals with disabilities. They imply that the individual with the disability is lesser than the able-bodied person, or that their body is not as good. It implies that the person with the disability should be saddened or depressed about their disability, when in reality the individual with the disability could be very happy with their disabled body. Able-bodied people need to stop assuming that every disabled person wants to be “fixed”. In their mind, they may be perfect just the way they are. To suggest that someone in their situation would be better off if they killed themselves is extremely disrespectful. You don’t know the many talents that individual has, or the contributions he/she has made or will make to society.

I cannot count the number of times I have been approached while in my wheelchair by random strangers telling me they will pray for me to walk again someday. What they don’t know is that I can walk. I walk all the time, it is just very painful for me to do so. My disability is lifelong, and is not going away because you pray for me to walk. My wheelchair ensures that I can go out with my family and friends, go on vacations, and enjoy my life the way I want.  Please don’t take that away from me and force me to walk because you think it is better for me to follow society’s norms than to live a full and happy life. My disability has led me to meet many wonderful people I would never have met without my disability, and it has given me a new perspective on life that one cannot truly know unless you walk in my shoes. I wouldn’t have it any other way.

Our society must get out of the ableist mindset that if people don’t walk they must be fixed, if they can’t hear they must be made better, and if they can’t see they must be cured. We need to quit thinking that all of these people must be miserable because they cannot live their lives “normally” like everyone else. These things are not true. Most people with disabilities embrace their differences and accept their disabilities as a part of their identity. Some people are not quite there yet, and still need our support to help guide them through a difficult transition into a newly acquired disability, and that’s okay. The important thing is not to assume anything about someone if you do not know them. Just because you see someone with a disability, it doesn’t mean you need to rush to fix it, or change it, or make it all better. Just support us. Be there when we need help with something, and let us be independent when we don’t. We will let you know when we need help. Most of all, remember that we are just like everyone else, we just get things done a little differently sometimes.