The Ethicist: What Do I Owe My Severely Disabled Parents?

November 4, 2018 by Joshua
in Ethicist

My series answering the New York Times’ Ethicist column with an active, leadership approach instead of an analytical, philosophical perspective continues with “What Do I Owe My Severely Disabled Parents?”.

A little over two years ago, my family was involved in a catastrophic car accident overseas. My younger sibling was killed, and my parents survived but are severely disabled. My father is quadriplegic, while my mother has a traumatic brain injury resulting in severe cognitive impairment.

My spouse and I were overseas for several months with my parents before they stabilized and were evacuated back to the United States. Then, over the next year (we don’t live in the same city) we traveled to their city often to help manage transitions from the hospital to rehab, to where they are now (both live with 24-hour care). My extended family lives entirely abroad and, for the most part, does not speak English. Therefore, I also help (and plan to help for the rest of my parents’ lives) to manage all of their financial and administrative matters, including trusts that I helped set up, applying for benefits, taxes, etc.

My father’s parents have reacted to his disability with the attitude that it is my duty to do everything he is unwilling to do (or ensure that someone else does it), and they believe it is appropriate for me to move to his city to manage his day-to-day affairs and for me to care-take emotionally for him to spare him further pain (e.g., for me to arrange all matters relating to my sibling). They have not expressed gratitude for my actions over the past two years except to praise my paperwork and administrative skills.

My feeling is that I have put on hold my own grief and emotional needs (not to mention the money and time spent and career opportunities lost) to manage this situation and also try to arrange for my father the best quality of life possible. Yet he refuses to come to terms with his disability, including refusing to use assistive devices and skills he learned in rehab.

My question is: What duty do I owe my father and grandparents? My father and I were not close before the accident, and while it is true that he has sacrificed a lot, as an immigrant, to ensure that my sibling and I had opportunities, he has always resented us for having a much easier life than he did. Given a lack of emotional closeness in our relationship (and my difficult childhood as a result), I don’t feel inclined to sacrifice my current life more than I already have. My grandparents (and, I suspect, my father) feel differently. To boil my question down: Assuming a parent-child (or grandparent-child) relationship that lacks genuine warmth (which I think would create more genuine desire to help), what framework should I use to think about what duties I nonetheless owe? Name Withheld

My response: There is no book in the sky or other measure of absolute right, wrong, good, bad, evil, obligation, or duty that 7.6 billion people will agree to. If there were, you would have consulted it, gotten your answer and wouldn’t have had to write here. There isn’t, so you did.

You ask what your duty is. Since everyone has different values, you’ll just get a label that not everyone agrees on. I suggest you want not a label but a practical plan to resolve your situation as best you can by your values and the values of others affected as best you can tell using empathy and projecting possible outcomes.

What should you do? I recommend:

  1. Figuring out what resources you have—relationships, time, etc
  2. Figuring what skills you have and can create
  3. Creating as many options as you can
  4. Considering what outcomes each option will result in
  5. Choosing which option to act on based on those outcomes, evaluating them using empathy
  6. Implement the option you like most
  7. Do the best you can, knowing that problems will arise

The New York Times response:

The cultural divide you describe is more common than it used to be. Most of your family lives in a place with one conception of family responsibility; you live in a place with a very different one. Let me add that, even if your grandparents think everything you have done is a matter of filial duty, they owe you gratitude for it. (I don’t know your family’s culture of origin, but this is quite likely to be true over there, as well.) In the end, however, you must live by the conception of duty that you yourself subscribe to. As John Stuart Mill put it, “If a person possesses any tolerable amount of common sense and experience, his own mode of laying out his existence is the best, not because it is the best in itself, but because it is his own mode.”

Your life matters, and part of the challenge of making a good life is to balance your own needs, projects and interests against your obligations to others. Plainly, you have done a great deal for your parents, and, despite their ideas about the Dutiful Child, they are not entitled to further derail your life. Perhaps if you and your father had a better relationship, as you say, you would have been willing to do more. But your father has played a role, then and now, in your disaffection. The accident has dealt your parents’ lives a devastating blow; if your own life were to be sacrificed in service of their care, the accident would have claimed another victim.

I am a college science professor, and over the past decade, I’ve noticed a proliferation of students who request extended time on exams through our office of disabilities. In math and science in particular, the time limit on exams functions as an important part of the test, i.e., making sure that students can manage their time well and complete their calculations quickly and efficiently. As a result, extended (usually double) time confers a significant advantage on the test taker. I have nursed some doubts about the legitimacy of some students’ requests for extended time, but that is beside the point; I am obliged to grant them. My question regards what to do when students who have benefited from such accommodations ask me for letters of recommendation, as many of them eventually do. Academic performance on exam-based assessments typically constitutes the heart of my recommendation letters; however, for students with academic accommodations, it should be important to convey a caveat about extended time, as this will affect performance and efficiency in jobs or graduate school. Is it ethical (or legal) to mention academic accommodations in recommendation letters? Name Withheld

My response: You ask what’s ethical. Since everyone has different values, you’ll just get a label that not everyone agrees on. I suggest you want not a label but a practical plan to resolve your situation as best you can by your values and the values of others affected as best you can tell using empathy and projecting possible outcomes.

Your question is legal/medical/other professional service. Talking to a professional, such as the school’s ombudsman or similar professionals in other schools or professional organizations, will answer your questions more effectively than a newspaper columnist.

The New York Times response:

The fact that a student has a disability is shared with the professor on a confidential basis, and you shouldn’t disclose confidential information about students without their permission. On the other hand, you’re not under an obligation to write undergraduate recommendations for everyone who asks. So if you’re convinced that the conditions of test-taking are relevant to interpreting a student’s grades, I suppose you could say that you’ll write a letter of recommendation only if you’re permitted to mention the academic accommodation. If that’s your position, though, you should alert students at the start. You would do well to confer with a lawyer at the start, too. Bear in mind that federal law generally forbids prospective employers to ask about mental disabilities, and similar restrictions apply to educational programs. (Exceptions are made when applicants request accommodations.) You may be entering a legal gray zone here.

And an ethical one. The point of accommodations is that, as the saying goes, tests should measure abilities, not disabilities. In many realms, processing speed is hardly relevant (there’s no great advantage to the speedy sonneteer); in other realms, it’s obviously critical (a truck driver can’t ask for extra time in deciding whether to brake). And in your field? Your view is that developed talent may involve being able to work at a certain rate, not just getting the right answer in the end. Someone who solves a lot of problems in an hour is, in one obvious respect, better at problem-solving than someone who takes much longer. In many jobs, I’ll grant, intellectual productivity matters; and productivity is a matter not just of what you do but how soon you get it done.

Inevitably, there are debates over whether accommodations make things fairer or less fair. Since the major testing companies announced, at the beginning of this century, that they would no longer flag test scores obtained with special accommodations, the number of students receiving those accommodations increased significantly. Accommodations are, of course, easier to get if you’re well-off and can afford to find and pay a psychologist who will diagnose a condition that entitles you to special treatment. (A College Board study suggests that nearly all students, not just disabled ones, do better on their SATs with extended time, especially in math.) In a California study from 2013, researchers concluded, “Higher rates of A.D.H.D. observed in affluent, white families likely represent an effort by these highly educated parents to seek help for their children who may not be fulfilling their expectations for schoolwork.” In short, the system can be exploited.

But these concerns must take their place among others. As an ethical matter, we ought to treat everyone with such a diagnosis as if it’s real. Anything less would be unfair to all of those with genuine disabilities. And let’s remember the upside of the new regime as well. Thousands and thousands of young people who would have failed in college or been denied places altogether are now getting educations that allow them to contribute more to the economy and to make more meaningful lives as well.

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