Disabled people are worthy of love

When a letter to the New York Times questioned whether it’s ok to dump a romantic partner with a long-term medical condition, the responses were diverse and passionate. Disabled writer Naomi Lawson Jacobs shares their own story, serving as a reminder of the adventures that can be missed if disabled people are deemed unworthy of love.

A recent New York Times column ‘The Ethicist’ features a letter and reply in which the correspondent asks whether it is acceptable to dump a romantic partner with a long-term medical condition. The anonymous woman, who began a new relationship and then discovered that the man she was dating had a chronic illness, wrote to the New York Times to ask whether it was ethical to stop seeing him for this reason. In response, philosopher Kwame Anthony Appiah wrote that someone in the correspondent’s position might consider whether they are ready to commit to life as a “caregiver,” adding that no one owes it to any potential romantic partner “to accept that burden”.

In an addendum he wrote in response to criticism from people with chronic illnesses, Appiah doubled down on this position. Reading his response, you might be persuaded that it takes a more measured approach. Appiah clarifies that it would not be ethical to leave a long-term partner who became ill. At the same time, he says that some illnesses “can over time impose serious burdens on those who have [them]” and that “burdens of care are often shared by our partners.” In his repeated use of the word “burden”, his emphasis is on how hard it can be for a non-disabled person to have a disabled person in their life. Later in his response Appiah acknowledges that the language of “burdens” of care can become conflated into talk of disabled people as burdens ourselves. He mentions the ableism that is often the result, but he does not seem to see the ableism inherent in his own advice.

The Twitter debate that followed this article revealed a diversity of disabled people’s responses to this issue. Some agreed with Appiah, saying that they would not want to stay with a partner who felt burdened by them. I have sympathy with this position. If I were going out with someone who wanted to run at the first mention of my medical conditions, I can’t imagine wanting to stay with them. Their negative reaction would be a red flag warning of potential rocky seas of ableism, or at least discomfort with me and my life, that I might have to endure for the rest of the relationship.

But other disabled people were angry and hurt at being described as “burdens”. I was among them.

When non-disabled people reduce me to nothing more than a potential difficulty for them, when they don’t recognise that a relationship with me can be as fulfilling as any other, I feel unworthy of love. All because I don’t measure up to societal standards of health.

I’m a disabled person. I have a chronic illness that involves care and mobility needs, and I’m autistic. As I write this, I’ve been indoors for thirteen weeks, entirely reliant on one person. Thanks to the state and most of the NHS washing its hands of me, I’m completely dependent on my partner’s care, cooking and cleaning to live. And since I can’t work full-time, I’m often dependent on their paid work to survive, too. By now, I probably do sound like a burden. I certainly persuade myself I am, sometimes, when I see myself reflected in that dark mirror of society’s attitudes towards disabled people.

We live in a society that places little value on the lives of disabled people and those with chronic illness. Representing disabled people as burdens to others is dehumanising, and it has a long, insidious history. It has led to disabled people’s mass institutionalisation, where those of us considered to be worthless to society have been shut away, rather than being enabled to live our lives to the fullest, even if those lives may be different from the norm. At the worst extremes of this ideology lie eugenics, those policies and practices that aim to exterminate the disabled people considered “unfit” for the demands of a modern society and a drain on its resources.

In contrast, society paints partners and family members of disabled people in angelic shades. From an early age, in books like The Secret Garden, we are taught that caring for disabled family and friends is a noble calling, accepted by good people.

Conversely, we describe disabled or chronically ill partners and family as difficult responsibilities, heavy burdens that these put-upon saints must carry forever. Daily in the press, in this COVID-19 era, we hear about “heroic” carers protecting their “vulnerable” family members. Rarely does the media critique the effects of this language. In his response to the letter, Appiah continues to rehash the old myth that anyone who shares their life with a disabled person must have the strength of heroes, or they shouldn’t even try.

If I sound like a burden, my partner, whom I’ll call SJ, might sound like an angel to you. When I fell ill, soon after I started dating my SJ, friends started asking them why they hadn’t left me yet. When SJ replied with confusion—why would they leave someone they love?—these friends began to talk about SJ in heroic, even superhuman terms. That’s the kind of strength they thought it must take to live with and love a disabled person.

But ask my partner, and they’ll tell you that I’m pretty great, actually. SJ describes me as a collectors’ edition book from a print run where the first page was printed upside down: worth more because of who I am, not in spite of it. I could list my achievements in an attempt to prove that my life is worth something, but it would be beside the point. Those aren’t the reasons SJ loves me. What matters is that I’m a human being that they care about. Just like every other disabled or chronically ill person who is loved by their family, friends and partners.

Even I have a tendency to talk about my partner like some kind of saint. Disabled people might call this internalised ableism.

When I celebrate SJ’s virtues, I’m sometimes reflecting back society’s pernicious myth of the angelic carer. In the process, I paint myself as a figure who is hard work to deal with. A burden. It’s SJ who often points this out to me, when I start peddling this myth.

When family and partners of disabled people are put on a pedestal, it starts to seem acceptable that some people can’t aspire to that superhuman standard. Surely, anyone thinking about whether to date someone with a chronic illness has to decide if they can reach that level of goodness? But those who support their disabled partners are not saints. Like any partner, SJ is a complete, flawed human being, who doesn’t get a cookie for being a decent person to their spouse. SJ is no easier to live with than I am. They have grumpy days and a lazy streak. I risk falling over their piles of clothes every time I open the curtains in the morning. SJ is also kind, and fun, and committed to fighting systemic injustice. They’ve got a dry, sarcastic sense of humour. And, yes, they’re also caring and kind. My spouse is not a saint, but—unconnected with anything they do for me—they are a rather excellent person. And so am I. We’re not a forever-unbalanced seesaw. We’re a team.

The myth of the angelic carer distracts us from the grim reality of care work in our society, and it keeps us from holding authorities to account when ‘care’ goes very wrong. I own a prayer book with a line about carers who have to put up with “kind, cruel and cantankerous” folk. Every time I read that line, I remember the statistics that show disabled women are twice as likely to experience domestic violence in relationships as non-disabled women but have limited access to services when they do. I think of the measly £62.27 per week that family carers receive for full-time support of another person. And, while paid care work involves different issues, I also think about the appalling numbers of older and disabled people who have died in care homes left unprepared for COVID-19 by the government, and recent care home abuse scandals. When informal carers receive no support from social services or the government, it’s one aspect of the wider systemic injustice that disabled people and their families face in our society. If you’re nervous about dating a disabled person, that may be the reality you’re truly afraid of.

But does the existence of that systemic injustice mean Appiah is right, and that people should stop and consider whether they can commit to a “burden” like me? As Appiah himself admits, it’s a bit more complicated than that. When SJ and I got married, in their reception speech they said: “If you can’t say, for poorer, in sickness, for worse, don’t get married.” When you commit to a relationship, you’d better be ready for anything to happen, including disability. Three in five people will become carers at some point in their lives. As you age, your chances of becoming a carer rise as high as your chances of becoming disabled. Nor is disability just something that can happen when you get older. Anyone you share your life with could become disabled, at any age, with no warning—most disabled people are not born with their impairments. Just like us, you’ll have no choice in the matter.

Life is about risk, and this is one of the risks you take when you begin a relationship with any human being.

The fact is – and isn’t it strange to have to state this – that disabled people are worth getting to know. If we ever want to change the way disabled people and their partners are seen, we need to re-examine our myths about disability.

During our early dating days, SJ was canny, not saintly, when they didn’t write me off as a potential burden. It was only when they got to know me that they began to understand what life with me is actually like. They exchanged the stereotypes and fears for the reality, found that I’m worth much more than the care I require, and decided they wanted to be with me forever. I did much the same with them. I won’t lie and say our life together has been particularly easy, over the past 15 years. We’ve had to fight some exhausting battles for rights and support. We have to think, together, about where we can go (can we access that restaurant?) and what activities we can do together (is there a wheelchair-accessible path around that lake?). We’re currently shielding together, which has been a strain. But every minute of our relationship has been worth the effort. Our obstacles may be different from yours, but facing challenges together is part of any good relationship.

A full life involves taking risks. Getting to know people who are different from you is not a saintly calling, but it can be an exciting part of life. Think of the many kinds of relationships you could miss out on if you don’t think disabled people’s lives are worth your time—fantastic friendships, fulfilling romantic relationships, rewarding life partnerships. I hope you’re lucky enough to discover that a life that includes disabled friends and potential romantic partners is an adventure, not a burden.