I started thinking about issues of responsibility for people with progressive, long-term disabilities because of my friend Teddie. (For Teddie and other examples, names and identifying characteristics have been changed.) Teddie was a single person who did not get the help she needed from her communities, and was far from anyone she could rely on in her family. I counted my blessings for a good marriage, and additional family and friends upon whom I could rely for help. When I started seeing a pervasive pattern of divorces of disabled people, it raised more fundamental questions about what we commit to in a marriage. Did we really mean we’d be there for the long haul, or just as long as we are getting as much as we give? Disability can put a terrible strain on the ones that end up as caregivers, especially on a spouse, who has a dual role. How can disabled people get the care we need without losing all we ever want—love? It takes persistent, demanding, high expectations of both parties to make a marriage, and help from our Friends is important.
Teddie’s communities had failed her. I knew Teddie from a group that met semiannually, and between my missed meetings and hers, we had sporadic contact over several years. We connected over the fact that we were both disabled, needed similar accommodations, and shared Quaker faith. Teddie had multiple sclerosis, and her health was degenerating too quickly for anyone’s comfort—hers especially. As a result, she tended to be depressed and sometimes angry, and had not completely learned to cope with her disability (adjusting to a disability typically takes four years, and even longer when the change is constant). Teddie’s closest spiritual and emotional community was our group, but we were spread across the country. She and I lived 2,000 miles apart. She had a small Quaker meeting that she attended, but when things were hard, she withdrew. In any event, neither the semiannual group nor the local meeting was addressing her needs.
Teddie’s unmet needs made her feel more or less abandoned. I took a week to visit her and spent all my energy helping her get things in order. I sorted paper, rearranged furniture, and cleaned; we visited and went on a weekend adventure. I went through six-month-old mail, mostly unpaid bills she could not face. She had lost her job after not calling in during an absence. (She was hospitalized after a suicide attempt—would you want to call and tell your employer that?) On top of medical bills, she had $30,000 in credit card debt. Her credit cards charged her monthly for being over her limit and for nonpayment, in addition to interest and finance charges. I helped her cope with phone calls from collections agencies that used shaming tactics; now she could tell them she was judgment-proof, and to please not call again.
I defrosted the freezer and filled it with pre-made food so that she did not have to spend so much on take-out, delivery, or other prepared meals. I was there only a week—not nearly long enough—and when I left, there was food in the freezer, furniture more accessibly arranged, Social Security Disability payments in process, and a (free) consumer counseling appointment set. Eventually the system would kick in and she would get the physical and financial care she needed. But the lengthy transition period of coping with her disability required a different kind of resource, the kind of accompaniment that I hoped her community of faith would provide.
Could Teddie’s meeting or our group have done sooner what I did? Maybe not easily. She had become angry at those who had helped temporarily but then withdrew, so she antagonized some people. Her disappointment was in the missing love that she’d had as an able-bodied person—love that she needed more than ever now. I recognized some of my own vulnerabilities in her behavior—the tendencies to get strident or feel sorry for myself when being dependent seemed especially hard to overcome, and the difficulty of separating the internal spiritual and emotional issues from the external needs. We both wished that people took better care of us. Whose job was it? Teddie’s needs could have been met, I thought, by a loving spouse, her family, or her faith community; I have gotten support from all three. In retrospect, I realized my disappointment in our semiannual group was misplaced—the care she needed should have been based locally. Eventually she moved to where it could be.
As I forgave Teddie’s abandonment by those of us who could have helped more, the concern I had carried was replaced by observations of even scarier abandonment. All around me, disabled people were being abandoned by their spouses. One woman’s partner left her when she needed to go through radiation and chemotherapy for cancer—he moved to another state, saying, "Call me when it’s over." After years of marriage to a spouse who became more disabled year after year, another decided on separation and eventual divorce. And it seemed that one whose spouse was mentally ill would give up all she had to get away. I’m not unsympathetic—we all need a respite from caregiving—but it is extreme to dissolve a marriage on account of disability. In each case, I identified with the departing caregiver-spouse, too. The situations were more sympathetic than a list can indicate. For instance, the man in the first example had cared for a previous wife through a terminal illness, a dying mother, and a severely disabled daughter, and had simply reached his limit. Sometimes there are financial reasons for the crumbling of a marriage—and certainly people with access needs often have financial challenges—but those were not issues in any of these cases.
Whose business is it to care for the disabled? It is our job, the disabled people’s, to define what we need and want, and to ask assertively, neither whining, complaining, nor demanding. We also must provide as much self-care as we are able—for example, by seeking medical advice, by exercising appropriately, or by investigating financial and medical resources. It is up to the potential caregivers to decide how they choose to treat us. Of course, if they do it in a martyred way, we may have to decline; that creates an emotional burden on us. After all, we wish we didn’t need extra care; the more invisible the help, the easier on our sense of belonging. If we admit that we all have some areas of need, we can realize that care-giving and care-receiving are our mutual efforts working towards an interdependent community. With a common goal, we can then communicate as equals about how to make that happen. As a caregiver for people with AIDS, for family members, and for my spouse, I know the rewards and challenges of tending to those we love. The hardest challenge comes when longterm care is needed in a marriage.
When I think about longterm physical dependence, I worry about whether or not I will be entitled to what I need. I am not passionately resentful of dependence like some; I am not apologetic for being alive, nor do I try to justify having needs. I do try to give as much as I can, in order to feel able to ask for what I need or want. But the question is whether or not those upon whom I depend might become resentful and abandon me. To say one is dependent on another is to imply that one is inferior; what I am talking about is natural interdependence where the mutuality seems to have become unbalanced.
In a marriage, a family, or a community where we hope to rely upon each other, we must demand more from one another. Demanding love or better from each other is necessary. This is a challenge. I am saying the strident word demand and the urgent imperative necessary. I am saying that aggressively demanding the best of your relationship is what makes a marriage. Evidence for the difficulty of sustaining a healthy marriage is around us: if you don’t demand it, you can drift apart and the marriage will fail. If you live in a secret place, there is no connection. The marriage bonds need to be strengthened, and demanding more—in the form of love and better—is an essential marriage-maintenance tool. It is what makes us grow, be closer, and be better people, and it’s the point of love anyway. It is what is required by our vows before God and these, our Friends.
I will illustrate with a picture of my marriage, but the same principles apply to any intentional community. Of course, other marriages vary in detail. I demand more dialogue with my spouse. I insist on finding more things to do together, like her reading to me and vice versa, like snuggling, and thinking about decisions together. I require our life together to be more of what I would want my life alone to be—and demand of myself to make our life together more of what she would want life alone to be. We live more intentionally together. We do art together, eat more often together, beautify our home together. We do not ease the accountability for reliability, faithfulness, encouragement, patience, and companionship; we both stay involved in making each of our lifelong dreams come true. We continue asking for more of each other and saying when it is not enough, so that the marriage will never crumble from within.
This advice sounds unnecessary—aren’t these tips the making of marriage anyway? Yes, but when one spouse is less functional there is a tendency to let things go. When one spouse is busy with more basic tasks, she may not take the time for all the others. We may let one another off the hook for the emotional well-being of the marriage. "I just wish he would keep me company when I come home from a day’s work and am cooking dinner and doing all the chores," one wife had confided eight years before giving up. I trust that if I demanded of my wife, or she of me, such companionship, it would be fulfilled. When one man started to explain why he wanted to leave, his wife loved the new possibilities his assertive communication produced. Without constant attention to one another’s less urgent (but not less important) needs, the foundations of the marriage can chip away. We can exhaust ourselves with the chores of daily living, especially when one or both partners are unable to do for themselves what they once could. "Reach that for me, would you"; "could you open this"; "I’m hungry"; "I need to bathe, could you . . ."
It is also harder to do things together: sex may become extra work, those pleasant evening walks hand-in-hand may no longer be possible, those creative dates may be more draining than they’re worth. It may be that increased healthcare, assistance, or access costs (and/or decreased income) have eliminated theater, restaurants, and concerts from the budget. The old habits of connection disappear.
This requirement of demanding more from one another is not limited to marriage. God requires of us to continually ask one another for better in the form of loving actions.
It is a crucial part of making the world into God’s realm. It is central to living as faithful people. We do God’s work when we demand more and better love. And here is where it takes a community to save a marriage. Long before there is a call for a divorce clearness process, we need to hold the partners in a marriage accountable to their vows. We need to see the reality of the situation and remind each partner what they can do to give more of themselves to the marriage. Not more caregiving, but more love. We also need to make sure that the caregiving partner gets respite, even when they seem able to cope. Perhaps reducing chores and costs with prepared meals is the most obvious option. But wouldn’t they benefit even more from getting a weekend away where they both will be served good food and given attention? Each couple in the meeting community should be getting this—and the meeting might view it as part of taking a marriage under its care to see that they do. We can do this proactively, rather than watching for signs that a marriage is damaged or spoiled, with ragged edges like the chips in delicate china after years of wear. I advocate this strategy for caring for all marriages—in health as well as disability.
We must call one another to fulfill the command to love one another; we must do all we can to fulfill it and to enable others to do it. That is what we are told in the Bible and what our faith teaches us. Our call is continuous: to be diligent in our faith and our love. We love others and want them to get the love they deserve—and that is to ensure we all are aiming at better, and expressing all the love we have.