Wired to conform, humans mainly comprehend uniformity and find solace in the norm. Any anomaly, therefore, invites surprises, contempt and derision even; something American blogger Hunter Kelch learnt early on. Born three months premature, the 27-year-old developed staph infection while at the NICU, which significantly damaged his brain, causing cerebral palsy. Like others with the condition, Kelch’s cerebral palsy rendered him a wheelchair user with limited mobility, altering people’s behaviour towards him – not always in a good way. Rude stares, unsolicited touching, unabashed pitiful looks, ‘fake flirting’, teenage isolation, Kelch has dealt with every adversity life’s thrown his way with a sense of humour and a pinch of assertiveness.

In a moving yet surprisingly pragmatic essay for TAL, the founder-editor of the much-loved blog, come roll with me, which explores topics like disability and accessibility, talks about insensitive attitudes of people towards the disabled, his hero - his mother, and finding love.

A little about me

I am 27-year-old, have cerebral palsy and use a wheelchair to move about. I am the founder-editor of my blog comerollwithme that tackles myriad issues ranging from sexual abuse in the disabled community to personal anecdotes about my dear family. 

It was a pleasant day in Milwaukee, Wisconsin – April 8, 1992 – when I came into this world. Unfortunately, though my actual birth date was July 4, 1992, so I was only 1.27 kilograms when I was born, all screaming and crying. We moved to Wausau, Wisconsin when I was eight.

Since I was born three months premature, I was placed in the Neonatal Intensive Care Unit (NICU), where I developed a staph infection which damaged my brain causing cerebral palsy and visual perception deficit. At 15 months, I was diagnosed with the condition, which affects all four limbs and my speech as well, and have used a powerchair since I was three. 

The condition continued to dictate and interfere with my life in my early years. I had multiple surgeries at Mayo Clinic in Minnesota. I remember being so scared about anaesthesia that I would forget to breathe. I would wake up in terrible pain and have two body casts. After my dorsal rhizotomy I would end up crying for my mom.

I had my first brush with death at 13, when I lost my uncle Mike, my Godfather, to suicide and depression. He was my parent’s best friend and spent every holiday, birthday and many a weekend with us. He was my greatest friend and like a parent to me. Even though he never had children, he taught me to be the best version of myself and be an amazing parent to my kids – if I can ever have them. 

I became an elder brother at the age seven when my parents travelled to Vietnam to adopt my sibling Nghia. Prior to my brother joining us, my family and I travelled to beautiful places like Puerto Rico and the Dominican Republican – an unforgettable experience. After my brother’s adoption, we traveled mostly to Florida every year. I have been to about 23 states so far.

Aside from my painful surgeries and losing my uncle Mike, I had a happy childhood.

Today, I am trying to use my experiences as a disabled person to pursue a career in professional blogging and advocate for a better society; one where equal opportunities are available in both personal and professional sphere for the disabled. It is my goal to branch out from blogging into podcasting and public speaking.

I love to play video games on my PS4, watching baseball, football and wrestling. I am a regular at my local ballpark and enjoy eating out and visiting new places.   

A supportive family

While growing up, I found my immediate and extended family supportive and sensitive towards my needs. However, as an adult I have seen changes in the behaviour of some of my relatives towards me.

In general, however, my peers always supported and respected me as one of them. I was fortunate to have friends who saw me – the human being – first and not my disability.

When I was a kid, I did not pay attention to strangers’ reactions to me. My mother educated me to identify rude stares and comments and not to pay them any heed. Both my parents have done a great job protecting me from those.  

While growing up, I found there was a general lack of awareness about my condition. I was often mistaken for one of ‘Jerry’s Kids’ or kids with muscular dystrophy. One night my mom took me to a party where she was asked by a woman whose English was not that great whether I was sick. She did not know how to explain so she just said my legs were ill. The lady started to cry and wail! I was used to strange reactions by now, so I didn't give much importance to her behaviour. 

I have been blessed with some incredible people in my life. Currently, I have the support of my caregivers - i’d rather called them dear friends- Randy and Crystal. My support system also includes my two other close friends, Sam and Andy. 

Other than my family, I had an aide in school to assist me with school-related activities, which was both a blessing and a curse. Their help, unfortunately, exacerbated my isolation. However, I had an excellent respite care worker, Lynn who took me places. She was like a grandmother to me. I miss her a great deal. As the years rolled by, my parents employed other support staff too, and one lady in particular, Deb became a dear friend. Her husband and she would take my brother and me camping a few times. She passed away four years ago. I still miss having her cookies with milk.

Outside of my family, friends, physical and occupational therapists, I didn’t really have much support.   

Overcoming isolation during schooling years 

My parents decided that I would be homeschooled initially, and my mother was also my teacher for the first few years of my life. After we moved to Wausau, I went to grade 3 in the Wausau Public School District. I attended South Mountain Elementary, John Muir Middle School and graduated from Wausau West High School. 

As a kid, I did not mind being homeschooled. However, after going to public school I realised I had not spent much time with kids my age. I had an easy time relating to adults but interacting with my peers until about high school had become daunting. 

I was lucky to have never been bullied by my classmates. However, at times, I felt misunderstood with regards to my disability. Though well-intentioned, some concerns voiced by my classmates felt misplaced and to some extent, exclusionary. One classmate thought I should not play basketball because he was afraid I would get hurt. Another time an office worker directed my mother and me to a self-contained classroom assuming because I was a wheelchair user I could not be in a regular class. The sight of me in my wheelchair stopped many from including me in extra-curricular activities. 

Another challenge was that I needed an aide to take notes for me, care for my physical needs and help me navigate the hallways, which seriously interfered with my ability to socialise with my schoolmates. I knew I needed the assistance, but it isolated me. I wish there was a peer assistance program instead.

One way I tried to overcome these challenges was by trying to be active in community sports. I was an assistant coach for a community football team in grades 5 and 6. I also went to a church with a friend on Wednesday nights for about five years. 

Despite the issues, I look back on my school days fondly. I was on the high school news team (production and interviews) and in the men’s choir. I also managed to make some close friends inlcuding my classmates and even my teachers. 

Not a child but 27-year-old!

Though I have not faced much discrimination, I do have issues with people talking to and treating me like a child. Recently, I was at a fair, and a worker gifted me a stuffed animal. They are not my thing; I am a 27-year-old man! I politely refused, but he forced his gift on me! I took it and gave it to my friend’s dog! 

People will stare or talk to me like I am a child, and even ask questions about me in front of me to my mother. She always encourages me to respond by persuading the other person to talk to me directly.

Another thing that annoys me is when someone ‘fake flirts’ with me. I know they do not mean to be rude, but if you are going to flirt with me, do so because you are genuinely interested and not out of pity. Recently I was at a party, and a strange woman came up and grabbed my arms and danced with me like I was a two-year-old. To make matters worse, she then asked my mother if it was all right in front of me! My mother walked away and left me to deal with the situation. I shot my mother the ‘rescue me’ look, and we left. I need to work on being more assertive because I was thoroughly enjoying myself and would have loved to stay there longer.

Overcoming present-day challenges

One of my greatest challenges is living in a world where proper access to numerous places is still a matter of concern. Most homes don’t have the provisions to accommodate someone with special needs like me. As a kid I could, and was carried about; that is not possible now. 

In high school, minimal interaction with my classmates brought about by my needs-based isolation, leading me to develop a stutter; something I struggle with till this day. I find that people just interrupt without waiting for me to speak or finish talking, or they just pretend to understand me. It makes me feel unappreciated and belittled.

Over the years, I have developed social anxiety due to constantly being stared at or being treated like a child. Some parents grab their kids and shield them from me with their bodies. I can not even begin to explain how that makes me feel. 

Cerebral Palsy and physical disabilities are not contagious. There is no reason for anyone to do this to their child. By doing so, they are teaching a terrible lesson to their kid in how to interact with people with disabilities.

To deal with my social anxiety and to get my views across without being interrupted, I started my blog. My mission, through writing, is to spread awareness about my condition and has helped me greatly in overcoming numerous obstacles.  

My mother, my hero

From attending numerous therapy sessions and treatments to staying with me during my hospital visits and surgeries, my mother’s steadfast support has always kept me safe. Whenever she feels I am being mistreated, she sticks up for me and is usually the loudest in voicing her protest. We have been through a great deal together. However, that does not mean we do not fight and have drag-out brawls. We do not argue often, but when we do, we make it a good one!

Her belief in me is complete and unshakeable, and she supports me in all my ventures.     

My mother has a circle of friends who are also incredibly supportive of me. My uncle and his wife have customised their home for my visits. I love going there because they make sure to include me in everything.    

I live in an apartment building for individuals with disabilities and found great friends in my neighbours. I am the youngest in the building, and that has its perks! 

Despite my incredible support system, my mother and I have recognised some deficits. We recently attended a conference and took a class on support circles. We are working with Crystal, one of my caregivers, to create a life long support circle for me that goes way beyond my mother. I must aim to live a successful, fulfilling life without my mother’s support. Of course, she will always be there for me, but I must be prepared for an eventuality when might not be.  

Living alone

I have been living alone for the last seven years. My parents’ marriage ended eight years ago, and after a year of living at my childhood home with my father, I moved out. I overcame my fear of being alone and learned to manage finances and other aspects of living on my own. In other words, I grew up. I have had to problem solve and make some hard decisions, which helped me become an advocate for myself and others in similar situation. 

Living in an apartment complex for people with disabilities opened my eyes to the neglect, abuses and hardships they face. It also taught me what community is all about. 

I inherited a cat named Sully, who helps me cope with the stresses of everyday life. He keeps me company when I am alone in my apartment. It is a nice change of roles – from being someone who needs care to one who provides it. 

Living alone has its share of pitfalls, like having to install an emergency alert system. About six years ago, there was a fire on the opposite end of the building. I had already been put to bed and was alone. I am unable to get out of bed by myself, and that day had to use the alert system to notify the fire department about my location and situation. Within minutes a firefighter kicked my door open. I texted my mother as well, and she was with me soon. It was a scary and emotionally exhausting experience.

To control my television and house lights, I use Amazon Echo. I can access music, audiobooks and Internet, and use it to call friends and play games. 

Taking to blogging

I didn’t choose to blog on a whim, it has been an emotional and psychological crutch for me. It has taken me a while to talk openly about this. I was always a good student, receiving excellent grades and was very successful during the first year of college. However, I transferred to a technical school soon after my parents’ separation, and there I struggled horribly, failing most of my classes. I was ashamed, embarrassed and dejected. My self-esteem hit an all-time low, and that’s when my mother suggested I start blogging. It was my ticket out of the darkness that was slowly surrounding my mind and heart. 

For the first few years, it was trial and error, and in some ways, it still is. However, I am pleased with how it has progressed and excited about its future. I am hoping to branch out in new and exciting ways.

My blog tackles critical issues like disability, accessibility and sexual abuse among the disabled, and to write about these topics I research a great deal. I read news stories online and scour Facebook (disability groups) for issues.

I also write a lot about personal experiences; mostly in the areas of accessibility and interactions with the public. I deal with these issues in different ways. I have even written letters to the Mayor.  

Falling in love

Falling in love, for me, has been one of life’s greatest gifts. My partner, Ashley, also has cerebral palsy and though I have known her for over 15 years, our relationship began in June of 2019. She lives in her own apartment, is a wheelchair user like me, and relies a lot on caregivers. Ashley is kind, caring and a fierce self-advocate; I am sure we will face many a life’s challenge together with our heads held high. 

Unfortunately, we rely on others to provide transportation for us to meet - our biggest obstacle – and that is why we end up meeting only once a week. However, we are working on a plan that will help meeting easier. We talk every night on the phone, and that makes us very happy. 

There are obvious obstacles in our physical relationship. We position our chairs in a manner that enables us to hold hands, however they make it difficult for us to kiss. So, Ashley came up with an idea; we kiss each other on the hand instead. It is our special way of being affectionate.

Keep rolling and keep smiling

Ever since I was young, I have considered myself to be an average boy. I never viewed myself as a person on a wheelchair but as someone who USES a wheelchair; a mindset that helped me a lot. My mother would always tell me, “You may have bum legs, but you have a brain and a heart!” My parents always treated me like an average kid. When I messed up, I got in trouble and was never allowed to use my disability as an excuse; they would never accept that. 

Growing up, nothing was off-limits in my father’s sense of humour, even my disability. I think his fun attitude helped me feel comfortable in my skin. I also learned to look at the bright side of things. Even now my mother and I will joke about stuff that is often not spoken about in a humorous vein and afterwards say, “That was just wrong!” I think our humour also puts others at ease.

I can’t change my diagnosis. I can’t control the actions of others. However, I can control how I live my life, and I choose to be happy.

There was a time, however, when I thought I had reached the nadir of my life. Failing college broke my spirit and I was depressed for many years. Then, my blog became my lifeline.  

Though I am not making a living from my blog, I am sure I have touched people with my story. I am confident that my hard work and message will lead me to greater things, including being financially independent. As far as I am concerned, I am getting an “A” in life.

Creating an inclusive society

Movements seeking full inclusion in schools have helped changed the mindset of the younger generation. However, more work needs to be done. At a recent conference, I met a man who had to fight to be recognised as a college student despite paying tuition and attending classes, simply because he has an intellectual disability. Currently, he is a teaching assistant at Syracuse University. He lives on his own, in a different state away from his parents and is thriving because of a strong support circle. 

Living alone has opened my eyes to the existence of general neglect, abuses and mistreatment of individuals with disabilities. Many a time, professionals who are supposed to help, are the ones mistreating the disabled. Loneliness and isolation are rampant in the community.

One of the most significant deficits in our society is the accessibility and transportation for individuals with disabilities. There’s an endemic lack of care. Group and nursing homes, and assisted living are understaffed, and abuses go unreported. I fear for mine and my mother’s future; if she would ever need a higher level of care years later.

So much can be done – too much for me to express here. Firstly, we need to make an effort to provide accessible transportation facilitating fulfilling of professional and social lives for the disabled. We need to value the skills and talents of all abilities. A serious attempt must be made to create adequate community jobs that can provide a decent living for those with disabilities. Severe penalties need to be in place for individuals and corporations who take advantage or abuse the disabled. The medical community needs to be trained and should give same level of care to those with disabilities as they do for the general population. Most importantly, we as a society need to value those with disabilities as people and treat everyone with respect and dignity.

Stop saying I am sorry

People have this tendency to look at us with pity rather than empathy. First and foremost, stop saying, “I’m sorry” to those with disabilities. If you are not sure what to say, ask how to communicate. I’d rather be asked if I needed help than to be greeted with standard pity responses.   

I am not a hero or a warrior just because I have cerebral palsy. My disability does not place me in the front of the ‘greatness’ line. I want to earn those titles like everyone else and would like to be remembered for being a good person than having cerebral palsy.

My mother feels the same way. She hates being called a ‘saint’ or being told how special she is for simply being my mother.   

I wish people could see the person rather than the disability. We are so obsessed with physical appearance and perceptions that we forget about the actual person. 

I think back to a conference I recently attended. The vending area had one table after another of micro-businesses. So many wonderful products created by people with different abilities!

I want people to treat me the way they would an average person who is not a wheelchair user. Talk to me like I am 27 and not a kid. Do not do anything to me or my body that you wouldn’t to any other 27-year-old man. Treat me and others with disabilities with dignity and respect. See me, not my disability. 

Stop knocking on the wrong doors  

Just because one door has closed, doesn’t mean all have. Stop knocking on the wrong doors! Keep moving and don’t stop until you find the door to your ambitions and dreams; this is where you will find happiness. Work on developing yourself and don’t cater to the society’s view of what you are supposed to be or act.    

The man I met at the conference who is now a teaching assistant at a university saw that he had an IQ of 40 on a piece of mail when he was 11. He did not know what that meant, so he googled it. Think about that for a minute. An IQ of 40 and he googled it. He had no limitations because no one told him there were limitations. Erase all those voices, real and imaginary, who set restrictions on your life. Part of the brain injury that caused my cerebral palsy also caused a visual perception deficit. When I was eight, a doctor told my parents I would never be able to read. Guess what, I had already taught myself how to read by the age four! No one told me I had this limitation, so it never existed.

My mom always says, “Tomorrow is a brand new day, a blank slate.”  You can’t control the past, but you can control today. Some things are beyond you like having a disability or illness. But, how you deal with adversity is totally up to you. 

I am not discounting the trauma and sadness that come with disabilities. It is not to say that there are no struggles. My mother has what she calls the 24-hour cry. When bad things happen, she allows herself to cry for 24 hours, then she makes a plan and forges ahead. Hardships are temporary unless you stay in one place. So, move forward; take one step at a time, and focus on changing your situation. Only look back to see how far you have come.

As I end each blog, my best advice is to Keep Rollin’ and Keep Smilin’.

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