Guest Article

GUEST ARTICLE My Brother Benjamin Has a Disability

AUDREY GARTNER ’23

In Spring 2022, I took Sociology of Disability, which is a class that helps bring greater awareness regarding those who have an impairment and examines how Christians — and really everyone — should treat people with disabilities (PWDs). Throughout this course, we examined the reality of being disabled in society and how people’s physical or mental impairments disable them in life. Viewing daily activities from the viewpoint of a person with disabilities helps one to see how physical limitations influence PWDs’ ability to function in society and what is necessary for others to know and to do when trying to help them. One of the disabilities discussed in class was Fragile X Syndrome — a genetic disorder that shares symptoms with autism and other disorders. Someone with Fragile X doesn’t make enough Fragile X Mental Retardation Protein (FMRP), which is vital for brain functioning and physical development. It causes developmental issues by impairing cognitive and learning abilities. This was of personal interest to me because my brother was diagnosed with Fragile X Syndrome when he was a young boy. Although Benjamin had some odd behavioral issues — barely eating or talking — he consistently engaged in regular activities. It wasn’t until he was 5 years old that he was diagnosed with Fragile X Syndrome. From then on, his life would be completely different than that of an individual with no disabilities. It’s hard to detect Fragile X Syndrome by observation alone, which ultimately results in stigmatization and prejudice. For people with Fragile X Syndrome, social norms and cues may be difficult to learn. Physical activities that normally involve society may be challenging as well. Those who aren’t aware of these characteristics may see someone with Fragile X Syndrome as incompetent or lacking basic awareness. Benjamin faces these prejudices on a regular basis — specifically from those with whom he has had very little contact. In social situations, Benjamin is shy, quiet, and not one to lead discussions. He sometimes makes inappropriate comments or gestures and has outbursts. He loses interest in conversations quickly and gets distracted.

Even the simplest of recurring tasks needs to be written down for Benjamin so they are not forgotten. Our family has adapted to this and provides him a physical list of things he needs to complete throughout the day. We have also adapted to the surrounding factors that influence Benjamin’s actions. We know how to help Benjamin feel comfortable — we avoid certain activities that may overwhelm him, help him feel welcome in any environment he’s in, and ensure his basic needs are met. As he has gotten older, he is better at carrying on conversations and talking to strangers when introduced. My relationship with Benjamin is unique in some ways, but also normal when it comes to aspects like sibling rivalry. I may help him pick out his clothes, but he maintains a first-place status in Mario Kart. Ultimately, despite any challenges caused by his Fragile X Syndrome, Benjamin was, is, and will always be my beloved — and often annoying — kid brother who happens to have a disability. Written with love and Benjamin’s excitement and permission.