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.
Last night my family and one of our friends saw Mr. Holmes at the Chicago’s Landmark Century Theatre. On our way out, we went with everyone else to pay for parking.
A cheerful man of maybe 60 was standing there. I asked if he was in front of us on the line. “No,” he replied, a bit oddly but with a friendly smile. “I would punch that machine. It’s crazy. It’s crazy out there.”
He asked my friend if she thought it was crazy out there. She replied, “I know what you mean.”
“I carry a whistle,” he told her, holding it up. “Do you carry a whistle?”
“Some people carry one on their key chain,” she replied. He asked to see her keys.
My friend understandably got a bit nervous. “I’m not going to show you my keys.”
I handed her the parking ticket, and said “Would you get on the line for me?” She went ahead to do that.
“That’s some whistle you have there,” I told him. “What kind is that?”
“A Thunderer. A policeman gave it to me. If you see anything that isn’t right, anyone who needs help, you blow the whistle. That way, people will come. I wanted to give it to her.”
He added, a bit embarrassed: ”She didn’t want to show me her keys. That’s good. You have to be safe.”
We chatted amiably. I asked if I could take a picture of it so I could buy one for my friend. I thanked him for the advice. We all happily went on our way.
Today is Mother’s Day. I just want to give a shout-out to all of those family caregivers–usually though not always moms–who should be honored today, as well. Yeah, that is my wife and my brother-in-law in a fairly recent picture.
More than 800,000 Americans diagnosed with intellectual or developmental disabilities currently live with a caregiver over the age of sixty. That’s usually “Mom,” with spouses, daughters, or others helping out.
Props to all of them. They’re working some serious overtime, in more than one way.
Hitting Cornel West, issues in urban policing, Al Sharpton, white identity politics in the GOP. And I have a final gratifying announcement on a more personal front, too.
Just a nice moment.
Congratulations to Dr. Vivek Murthy, our nation’s nineteenth Surgeon General. Here’s a nice article in Vox about what he hopes to do in the position. Here’s another on why I am especially gratified by the outcomes of the successful nomination fight.
Also congrats to Dr. Alice Chen, with whom I worked closely at Doctors for America, which I advise. I remember especially fondly sharing a burger with Alice and my brother-in-law Vincent while Vinnie and I were on a Hollywood vacation. Alice is a whirling dervish of energy. And she does it all with a smile.
PS. Congratulations to both Dr. Murthy and Dr. Chen on their engagement.
PPS: Dr. Murthy’s grandmother was on-hand to see Vice President Biden officiate at the swearing-in-ceremony. What kind of nachas is that?
We wish all our readers and especially the commenters a peaceful and fulfilling 2015.
In some parts of the world such wishes would be a cruel fantasy. That includes the swathes of disintegrating Syria and Iraq under the control of Islamic State and its charismatic leader, the Rolex-toting and self-proclaimed Caliph Abu Bakr al-Baghdadi.
US officials are baffled how to fight this new kind of enemy. Al-Qaeda had a bizarre and fantastical goal, the restoration of a purified Caliphate of all Muslims, and a too-clever bank shot strategy, attacking the “far enemy” American sponsor rather than the corrupt governments of Muslim states directly. But its structure and methods were straight out of the 150-year-old manual for conspiratorial violent revolutionaries, and would have been familiar to the Fenians, the Black Hand, or Carlos Marighella – and to the governments who fought them. Islamic State has similarly crazy ambitions, but it rules a territory, and possesses a useful army and a Twitter account.
John Bewick, for whom I worked when he was Secretary of Environmental Affairs in Massachusetts, died this morning, surrounded by his family and celebrated by his friends. With all due respect to my various deans and chairs, I think John was the best boss I ever had, and a week doesn’t go by that I don’t teach off my years in EOEA, shamelessly retailing what I learned from him and from the rest of the gang he assembled. Ed King, the governor in whose administration we served, was a sort of Harry Truman/business-oriented Democrat from whom almost nothing was expected on the environmental front, but John discerned that King (i) liked finished product rather than being asked permission even though King asserted the opposite (ii) was basically indifferent to environmental issues but loved anything with an economic development payoff. Especially at the time, this set was a target-rich environment. Generally regarded as the most successful executive agency in that administration, we put through a series of important environmental initiatives affecting (for example) endangered species, cleaning up the Charles River, a depuration plant that put Massachusetts shellfish back on menus up and down the East Coast, a whole series of environmental regulations implementing delegated environmental powers, and an innovative hazardous waste facility siting law. It was an exciting time in environmental policy and we had the unusual opportunity to make up a lot of it as we went along.
John’s achievements in public service, when I worked for him, are inseparable from the team of assistant secretaries he chose by a rule of never hiring anyone not smarter than he in at least one useful way, and no two people alike. I (and the others) remember our first meeting together, when we all looked around the table at the Newton fireman’s son who finished a GI Bill BA at U.Mass in two years, the dollar-a-year hi-tech exec, the pointy-head MIT professor, etc., all thinking, “I have nothing in common with anyone here. This is going to be awful!” We were completely mistaken. John made the team work by being patient with everyone who wasn’t smarter than he in all the other ways, namely all of us, by being almost radiantly committed to each of us as individuals and to the public good, by forcing us to educate and challenge each other, and by his terrier-like obsession with getting the science right and understanding the politics of the current issue. It’s significant that the whole team, including various commissioners and other staff, have had well-attended reunions every five or ten years, the last this past summer. Here is a brief formal biography.
If you fall out of your dinghy into the Charles and don’t get sick, or see an eagle flying around the Quabbin, or for that matter if you think you learned anything in a course I taught, thank John Bewick.
Last week, I attended the American Society of Criminology annual meetings. (Mark Kleiman, Johann Koehler, Keith Humphreys, and others were also in attendance.) My friend Peter Reuter and I got bored and decided to take a walk. Not far from the conference, we encountered the Moscone convention center. A door was propped open. So we went inside. We spotted some sort of football-field-size convention hall at the bottom of a long escalator.
We went inside, where we encountered people setting up for a big auto show. There were maybe one hundred Porsches, Ferraris, and other fancy sports cars, classic cars from the 1930s, and more. We strolled around for about thirty minutes, taking pictures among the people polishing the cars. It was a very pleasant self-service private session at an upcoming auto show of some kind.
We wore our ASC conference badges, which of course had nothing to do with whatever everyone else was wearing around us who were actually supposed to be there.
We left the same way we came in. No one gave us a second look. Maybe they would have given us one of the cars, if we had only asked for the keys.