Advocating for the disabled can be a little tricky sometimes. You want to talk candidly about issues that affect your peers, you want to go into the details of the struggles you face as a community but it is a fine line between raising awareness and coming off as pitiful.
My greatest concern is that the essence of the cause will be lost because of prejudicial perception. As a self-proclaimed advocate, I readily take up the privilege of shedding a light onto our lives. Whatever has been in the dark will be seen and solutions found. The cause has always been clear and intentional; we seek to achieve a world that is fair, one that is accommodating and respectful of all people.
A wise woman once said, “before we can build metal ramps, we need to first build mental ramps.” The greatest hurdle we must overcome is a retrogressive mentality that always disregards the validity of the disabled cause. We are not second-class citizens. We matter.
When I started my weekly visits to the PGH Nakuru for physical therapy, I was aversive of the idea of being in an environment where my disability was put on display for all to see. My attitude was distasteful to say the least. It changed however when I met David; a grey-haired man with a spine infection who was thinner than I was, much much thinner. Features of his bones could be seen over the skin; it was clear that David was on his last legs. His wife didn’t falter for even one second to bring him to the hospital twice a week despite them living over two hours away.
They passed through many hospitals on their way, but none was satisfactory because none had a well-staffed, well-equipped physiotherapy department. Inaccessibility to services is a common narrative that is felt far and wide by disabled people. Physiotherapy is the only hope that people like me have of ever been on twos again. Most departments are understaffed and are forced to make do with clueless students who are only interested in getting a signature that confirms they were present.
To access assistive devices such as catheters and briefs, people have had to make long trips because there is simply no reasonable access to the things we really need. If you think about it, adult diapers are just as important as sanitary towels, probably even more since diapers are used every day yet some supermarkets don’t even stock them on their shelves.
Wheelchairs are a basic need for people who experience disabilities that affect their mobility. There are few local providers who stock bulky, expensive, unpractical chairs that only serve a small percentage of their intended purpose. For people to get light wheelchairs that are durable, foldable and easy to use, they are forced to shop overseas taking them back thousands and thousands of shillings. What’s worse, if the chair breaks down, spares and repair services have to be sourced overseas as well.
For the longest time, I wanted to go back to school and finish my degree. We went to the university to inquire about the possibility of enrolling into a program that would enable me to attend virtual classes from home. They suggested that I pay for a lecturer to come to my place a couple of times a week to teach me and give me assessment tests. I had to cater for his fare and pay the full fee. My family was already going broke because of the bills from the hospital. Now, this!
The National Council for People With Disabilities has a lot of roles to play in the betterment of the lives of the disabled people. One of the paramount roles is to enforce reasonable access to services and public facilities. Though we are not where we were, we are certainly not where we ought to be.
Our medical covers which we religiously pay for every month, do not cater for the services of a caregiver or even medication. I have friends who are constantly taking medication for conditions that have developed as a result of their disability. Medication for nerve pain, infections, pills that reduce the effects of involuntary muscle spasms, bladder and bowel movement. These are all expensive medications that are essential in order for us to live quality lives. Most of us opt to suffer in silence because with everything we already have on our plates, buying meds isn’t something we can afford.
Reasonable access to education, job opportunities, healthcare is a mirage in our country. It is a fictionalized story that is told to my community to make us feel like our presence is felt when the truth of the matter is far different. There are clear policies that have been stipulated in our construction, but most remain unenforced.
Inclusion shouldn’t just be reserved to the metropolis; it should be devolved down to the counties and ever lower to the villages. People shouldn’t have to travel miles and miles to seek medical assistance that is recurrent. We shouldn’t have to go deeper into our pockets to get through school. The field needs levelling.