I wrote an op-ed in Thursday’s Chicago’s Sun Times about the impact of Illinois’s budget crisis on services to people with intellectual and developmental disabilities. A gentleman with initials “J.K.” read it, and sent me the below email.
My wife Veronica happened to see it, and composed the below response, which I am posting below.
I would like to take a moment to address your question: “Why can’t your wife do it?” As I hear the question, you are really asking: “Why should my hard–earned tax dollars go to help you or people like you?”
First of all, I’d like to say that (I have learned) writers have little say over the headlines that are used for the pieces they write. I cringed when I saw the headline, “Who will help my brother-in-law?” I was concerned that people would jump to the conclusion that we were throwing up our hands and asking for help – an Op-Ed Go Fund Me, if you will. We are not. Harold’s purpose was to present the situation of a few real and relatable human beings being who are being negatively affected by the budget shenanigans going on in our state. He intended to illustrate the dilemma facing thousands of Illinois families, most much less fortunate than our own. Let me explain our situation, again as one example, and also talk a bit more about the needs of families of individuals with intellectual or developmental disabilities.
My widowed mother died suddenly in February of 2004. A few days after the funeral, my husband and I along with our two daughters – then seven and nine – drove Vincent to our home in the Chicago suburbs. We re-arranged our home, bought some furniture and settled him in. Almost immediately, I began to arrange his long-needed medical and dental care while helping him mourn the loss of his mother and everything that he knew.
Vincent lived with us for almost three years. The care for an intellectually disabled adult can be joyful, rewarding, but also relentless. There were no longer “babysitters” so every outing – read ballet lesson, soccer practice, pediatrician appointment, trip to the grocery store – became a tour de force. Vincent, like many people living with Fragile X syndrome (the cause of his disability) will eat everything in sight. He also sleeps poorly. This translates into excessive nighttime eating of everything from cereal, flour, mayonnaise – everything. We installed a lock on our refrigerator. Every night we would leave Vincent a snack, and we would stow all of our uncanned food into a few locked foot lockers. We would then drag these foot lockers into our garage to keep Vincent from prying into them.
When Vincent finally found a spot in a sheltered workshop – he was thrilled – the expectation was that I be ready for his pickup between 7 and 8:00 each morning. His drop off could be any time between 1:30 and 3:00 p.m. Do you know many people with a job that would accommodate this schedule? I don’t.
At the time Vincent came to us, I was working from our home on completing my PhD from the University of Michigan. The plan had been for me to work from home and commute as needed while caring for the house and our two children. Ultimately, it became impossible for me to continue. I have been out of the workforce since my entry into my doctoral program. Due to the erratic needs of my brother and some other family complexities, I haven’t been able to work for years. I have volunteered in the community, at Vincent’s social service agency, at my church and in our local public schools.
As you mentioned, Harold is a professor at the University of Chicago. Imagine a single mother or a family living close to the edge and then impose the need to remove an adult from the workforce and loose years of potential income. This would be a crushing financial blow. Add in the medical expenses (more about this later) – paid for by your tax dollars via Medicaid and Medicare – and almost any family would be bankrupt.
Vincent has had many medical problems. Since his arrival in Illinois I have accompanied him to innumerable doctor appointments, emergency room visits and hospital stays. On one occasion Vincent was discharged from the hospital on three different intravenous antibiotics. He had a PICC line – a long-term IV that is inserted in the arm and ends at the superior vena cava. He needed me to administer the medications, care for the PICC line, give him injections of his anticoagulant medication and change dressings on the sores he had on his lower legs which were the source of his infection. This went on for a month. This was also the straw that broke the camel’s back with respect to my dissertation. Thankfully, my discipline is nursing.
Despite all of this, we were very lucky. Vincent is charming and funny. He has remarkable social intelligence. Perhaps most important, Vincent is very gentle. He is a large man, about 240 pounds. If he were physically aggressive, a fairly common issue among men with fragile X, I don’t know how we would have managed.
Vincent is also able to feed, toilet, dress, and bathe himself. Not all individuals with intellectual and developmental disabilities have these skills. I can only imagine how much more relentless and exhausting these added responsibilities must be.
But, you ask, “What does this have to do with me?”
Well, let me ask you something: Do you, should we as a society, believe that the birth of a person with an intellectual or developmental disability should impose such a burden that the very idea should lead families to despair? Do we so devalue the lives that Vincent and his peers lead as to heap a crushing personal and financial blow to families upon the stigma already associated with life as a person living with an intellectual disability?
Vincent, like all people has a complex inner life. He has wishes and hopes for the future. He deeply wants to live the kind of life he perceives a “man” should live. He wants a job, a car, a cell phone. He wants to get married and have children. It is poignant to be with him as he is watching children with their parents. He often says, “Those will be my kids someday.” He loves our family and is fiercely proud and protective of his nieces. Nevertheless, he didn’t want to live in his sister’s house the rest of his life. Would you?
I hope that I have given you a glimpse into a situation not many people talk about. I can’t tell you how to feel. I hope that you would find it in your heart to see the value of efforts that help people with disabilities live with greater dignity. I also hope that you see the value of reducing the isolation and lightening the burdens experienced by many families who confront these challenges.