Why I’m Glad My Brother is Intellectually Disabled

Now that the title pulled you in, let me assure you, I am not a person who says they wouldn’t change a thing about their loved one with disabilities. I would take away my brother’s disabilities in a heartbeat. Why would I want him to suffer? I love him, and I fervently wish he had an easier lot in life. So why am I glad he is intellectually disabled?

My answer is complicated. It’s estimated that between 30 and 40% of people with intellectual disabilities also have some type of mental illness. My brother is in that unfortunate category of people with dual diagnoses. David is not only intellectually disabled, but he is also schizophrenic and has obsessive-compulsive disorder. He also has a host of physical ailments, including painful scoliosis and limited vision. He was dealt a tough hand to play. If I were given the magical power to take away only one of his issues, it would be schizophrenia. Without a doubt, I’d leave the others intact and take away the schizophrenia.

Having an intellectual disability has not been easy for David or our family. He struggles with communication skills and is easily frustrated because he can comprehend considerably better than he can communicate. I often think how frustrating it must be not to be able to tell people what you want or need. I think about the experience my husband and I had when we got lost in the Tuscany countryside of Italy. It was before we all had phones with GPS, so there we were on a moped in the rain, with no idea how to get back to our hotel. We found several people and asked for directions, but no one spoke English, and we were completely hopeless with Italian. It was scary and frustrating, but it was a few hours out of my life. My brother lives in that trapped reality every day of his life.

Even as difficult as it is for David to have intellectual disabilities, schizophrenia is what has made his life exponentially more challenging. Schizophrenia causes him great emotional pain that often manifests in anger, destruction of property, and self-harm. Medications have helped immensely, but there are still times the mental illness breaks through the pharmaceuticals.

Thank you for being patient as I have meandered to my point. I am grateful that David is intellectually disabled and not only schizophrenic, because having an intellectual disability qualifies him for government assistance. The state pays for his housing, food, and medical care. Because the state pays for his care, he is able to live in a facility where nursing care is available around the clock, and let me tell you, he keeps the wonderful nurses busy. If he were only schizophrenic, there would be very little assistance or services available. I could hardly imagine where he would live or how he would fare. Our system miserably fails many people who have mental health issues.

Compliance with medications is a significant issue for people with schizophrenia. Many people will take the meds, start feeling better, assume they don’t need them anymore, and stop taking them. It becomes a vicious cycle of having a schizophrenic episode, getting back on meds and stabilizing, and then going off again. My brother doesn’t have a choice. The nurse gives him meds twice a day, and he takes them. He never questions it, as it has been a part of his life for almost forty years.

Cost is also a factor in compliance. If you can’t hold a job because of your mental illness, how do you pay for your medications? I know that if my brother hadn’t received financial aid, we wouldn’t be able to afford the level of care he receives. His medications alone would be astronomical. With one trillion dollars in Medicaid cuts now in the works, our country is a place where being poor and having health or mental health issues is a scary situation.

I live close to where many unhoused people congregate. I occasionally see people who exhibit some of the signs of schizophrenia that I recognize, gesturing wildly, talking to someone who isn’t there, and exhibiting erratic movements. My heart breaks for them. It’s not a far stretch to imagine it could have easily been my brother out on the streets. Without his intellectual disability, my brother would most likely be in the same position. In reality, without the care he’s received, he probably would not have survived this long.

I wish I could wave that magic wand and erase every single one of my brother’s diagnoses, but if I could only remove one, it would be schizophrenia. Compassion and care shouldn’t be a political issue. Let us return to being a country that has compassion. Let us take care of the most vulnerable amongst us.