Mark is a 22-year-old person suffering from muscular dystrophy. He says he was born with the disability since it is hereditary. His body has the inability to produce enough protein necessary for the formation of healthy muscles. In that case, Mark has found it difficult to taking part in different activities such as sports. He sometimes has trouble walking and hence will spend most of his time in bed or in a wheelchair. During such time, his brother, Kevin, will take care of him. Because Mark can barely do tedious activities, he has needs such as a person who will move him around in the wheelchair. Also, he requires regular therapy to make sure that he does not lose his muscles totally.
Perception of supports received
I am a happy man with my condition. From these words, Mark seems not to be troubled by his condition. He, however, says that he felt a little bit out of place when he realized that he could not take part in some activities. Mark says that the hardest part of his life was when he was a child. He wished he could be able to play the same way as his friends but it was against the advice of his therapist. He does not regret not enjoying his childhood adding that he accepted the situation and adapted to not playing.
People around me will always try to keep me happy and healthy, especially my brother, Kevin, I appreciate them. Mark enjoys the support and the treatment he receives from his brother and other family members. He believes that everything that happens in this world has a meaning. He is very hopeful that one day, a medicine or therapy will be invented that will help cure his condition. Apart from the support from his family, Mark says that he has been inspired by leaders who show passion in helping the disabled in the community. He says that his family was not able to afford some of his therapy costs and to buy his an automatic wheelchair. He got support from the local leaders who ensured that he received medication and therapy on a regular basis. They also made sure he acquired a wheelchair. Mark is a very happy person.
Aspiration and Dreams
Mark is not letting his disability be his inability. Just like anyone, I have a dream, says Mark. He is dreaming of a generation where someone will not be judged by their race, color, or disability. Mark says that there are some things that are beyond the reach of people. We do not choose them. They choose us. According to Mark, he did not choose to suffer from muscular dystrophy. It is something that is transferred down the family. His mother is also suffering from the same disorder, only that for her, it is not easy to note.
Mark sees himself as a better inspiration for the coming generation. He says that many times, people have lost hope due to their disabilities to an extent of committing suicide. However, he thinks that disability should act as a force that burns from within a person to make them different in the community. However, Mark says that living with a disability is sometimes very difficult when the disabled person does not get support from the community. He dreams of a country where people with disability will be recognized and a kitty set for them to support them in their basic needs.
What I learned
From the experience I had with Mark, I learned that disability should not be inability and no one should be judged by it. Mark looked a strong person even when he was suffering from an acute muscle disorder. The other thing I learned is that many people with disabilities do not reach their dreams because they lack the support from the community. With proper support where people with disability will be recognized, the stigma that most of these people suffer will be eliminated and a better world opened for them.
Questions it raised to me as a leader
What is my role as a leader to ensure that people with disabilities are supported within the community?
Are leaders doing enough to ensure that people with disabilities are not discriminated in places such as schools and workplaces?
Have I ever made any effort to support a person with a disability? If not, why do I call myself a leader?
Next Step for you as a leader
I have learned the ability of people with disabilities from the experience I had with Mark. First, I am aware that even people with disabilities have dreams which they want to meet. Most of these dreams hang on their leaders who they look up to. As a leader, I am looking forward to ensuring that in the future, people with disability are recognized as a marginalized group which requires special attention. A special kitty where funds will be raised from well-wishers with the aim of supporting those that is incapable of affording the basic needs. Also, as a leader, I am looking forward to sensitizing the community on the benefits of appreciating those who live with disabilities and to show support and love to them always. Through love and support, people with disabilities will realize their dreams and will feel as humans who were born for a purpose.
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