A guest post for International Day of Persons with Disabilities by disability advocate Brian Muchiri.
Being a person living with a disability is not something that was in my bingo cards. I don’t think it is something that is in anyone’s cards, for that matter, but it would seem that these are the cards that 16% of the world’s population has been dealt. One in six people has some kind of disability, and that is an incredible statistic to think about.
It is one thing to acquire a disability, but it is a whole different story to learn how to live with it—especially if you have a disability that significantly affects how you go about life and limits your ability to carry out basic functions. Once you master that art, you can choose to go a step further and use your story and experiences as education, motivation, and inspiration; not only for the disability community but for anybody else who might benefit from a gentle nudge towards courage and personal development.
This year, I commemorated ten years since my accident. In hindsight, I barely recognize the 19-year-old who was brought back from the hospital with a cervical collar and a broken, weakened body. I have grown much stronger, but my growth hasn’t just been physical.
For a long time, I didn’t see myself as a contributor to the subject of equity and inclusion because I honestly had no desire to be in the disability community. There was a sense that I wasn’t really disabled. It didn’t matter how much change I had experienced in my body or the trauma my loved ones were going through as a result of my condition—I couldn’t bring myself to accept the fact that I was now a disabled person.
My denial stemmed from the understanding that disabled people had no place in the world where I come from. The only disabled person I knew was a woman with cerebral palsy. She stayed hidden, but you could hear sounds from outside. The curiosity, the conspiracy of her distorted face and body, the mystery—all that was enough to make me afraid of her and any other person who had a disability. When it was my turn, I knew that that was how the world would see me, and I couldn’t accept it.
So many years later, I am proud of myself, who I am, and what I represent. I am so grateful that I live in an era where people like me don’t get locked away in dark rooms, and children don’t whisper our names in terror. I am happy to contribute and participate in conversations that further the agenda of human rights at all levels of society. I aim to accommodate equal opportunity and participation for all disabled people.
The disabled people around me are doing their best to make life better for themselves, but it always seems like the odds are stacked against them. Ever since I embarked on my advocacy, I have come across the stories of people who still live like the woman from my childhood—locked away, hidden, and treated as “other”.
A few years ago, I lost a friend to pressure ulcers. He had been in and out of the hospital for half of the time he had his disability. He lived in solitude, a life detached from friends and creative interests. He stayed in bed, staring at his phone and existing more than he lived. He was always tired when we spoke; even having a shower was a task for him because he was so accustomed to being in one position for long periods of time. In my heart, I fear that this is the reality for most of my peers. This is the life they live.
What can be done? Well, from my own experience, most of my problems were resolved through acceptance and not being afraid to do the hard stuff. It is easy to spend all day in bed watching bukbang videos of people eating large meals, but at the end of the day, there will be very little fulfillment in that. Getting out of bed and completing a task is much harder. It gives you a problem you need to solve, forcing you to apply yourself, challenge your skills, and put your intelligence to use. At the end of the day, when you are done with what you set out to do and you are lying in your bed exhausted beyond words, you will be grateful that you got out of bed in the morning because you will have achieved something.
My advocacy is centered on understanding yourself and the changes your body has experienced. This understanding helps you accept who you are—your strengths and weaknesses. I am most vocal on social media. I create content on YouTube, where I post lifestyle videos about my unique experiences as a young man navigating life with a spinal cord injury. I try to be as truthful and authentic as possible because I acknowledge that not many people are doing the kind of advocacy I am doing.
I believe that there is a great opportunity for the international community to get involved and collaborate in the empowerment of disabled communities around the world. This is especially true in regions where laws and environments are not as disability-friendly as they are in the West. Support and collaboration could include creating online communities where people can find their peers and discuss shared challenges. These communities could offer emotional support, ensuring that no one feels alone or without someone to turn to.
Support would also include providing for the most basic needs of disabled people in various regions of the world. This includes wheelchairs, air mattresses, adult and children’s diapers, and medication. Without these items, living fully becomes a tall task, and the simplest things feel mountainous. As someone who experiences the strain of keeping up with medical bills, I know all too well how much of a difference this kind of support makes. The extra purchases that a disabled person must make can be overwhelming.
The world might be separated by seas and great oceans, but the issues we face have similar underlying causes. The difference is that the opportunities to address these challenges vary depending on one’s environment.
For this year’s International Day of Persons with Disabilities, my role as an advocate is to pass on a message of possibility and courage. The possibility of what life can offer and how much we can still achieve with the cards we have been dealt. The courage to stop comparing ourselves with able-bodied standards, to chart our own paths, to set our own goals, and to celebrate the milestones that matter most to us.