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The coronavirus pandemic has made us all feel closer to loneliness, which has led to some fascinating discussions with the disability community, with many claims being made about the unique attitudes and approaches that disabled people have towards the practice and art of solitude.
Some say that disabled people can teach able-bodied people valuable lessons about independence. Disabled people themselves agree, sometimes with bitter cynicism. But many of us also worry that we will be left alone, without the support we need to meet our most basic needs. Are disabled people hit harder by forced isolation? Or are they better equipped than others to cope?
The answer is complex. Depending on the characteristics of their disability and other factors such as social status, economic stability, and access to services, the experience of loneliness among people with disabilities tends to take one of several different forms. Now is a good time for all of us, disabled or not, to think about what loneliness means for people with disabilities, in peacetime and in times of crisis.
Disabled people are more likely to be lonely because, at least in part, of ableism and social neglect.
Many people with disabilities live fairly lonely lives at the best of times because they don’t feel fully accepted or understood. Some of us don’t have many close friends. We may not have any deep relationships. The relationships we do have can be friendly and superficial at best, or awkward and hostile at worst.
There are a thousand possible explanations for this. Most of the reasons are fluid and changeable, but still powerful. Some people don’t know how to “put themselves out there” because they feel uncomfortable with their disability. They can’t imagine being accepted for who they are. Others are hurt and guarded because of bad experiences from the past.
Sometimes we feel lonely and isolated because the people around us don’t truly welcome us. Their reactions to us tend to oscillate between overly cheerful responses and uncomfortable avoidance. Ability discrimination is a real, recurring and isolating experience for most disabled people.
So for many of us, being “alone” in some sense is nothing new. It may be unwelcome, but it’s certainly not unknown.
Some people with disabilities are isolated from their communities through formal segregation or institutionalization.
Some people with disabilities are literally and physically isolated from other people. They live in nursing homes, group homes, psychiatric hospitals, or even state hospitals for the developmentally disabled. They work in sheltered workshops where the workers are all disabled but the supervisors are not, and they have no or very limited contact with the general clientele. Some attend “day programs” that may or may not include regular contact with the community.
In most of these settings, efforts are made to reduce segregation by inviting visitors and organizing site visits and “community” activities. The most progressive programs allow individuals to plan their own activities and work primarily on their own terms, with one-on-one support. But there remains an invisible barrier between people with disabilities and the community…a lingering sense of alienation and reservation left over from more traditional, intentionally segregated models.
For a significant portion of the disability community, social isolation and physical isolation go hand in hand – and it is not a choice, it is a situation that disabled people struggle to escape.
For many people with disabilities, nearly all of their “friends” are caregivers and service providers.
Most people need human contact — perhaps all of us do. But for many people with disabilities, their only regular human contact is with caregivers and service providers. That’s better than nothing, and in some cases essential, but it’s not usually the same as a friendship or deeper relationship.
It is possible to build strong and genuine bonds with caregivers. In fact, relationships between disabled people and caregivers tend to be much better when there is genuine respect and personal affection between the two. In some cases, parents, siblings, or spouses can be capable and able-bodied caregivers for disabled people.
Yet there is an inherent power imbalance between people with disabilities and their caregivers that has the potential to distort and narrow the relationship. And it is not all one-sided. People with disabilities depend on their caregivers for their physical needs. But caregivers also depend on those they support, financially because it is their job, and sometimes because it is a vocation or an integral part of their family obligations. These factors make relationships between caregivers tricky and unreliable substitutes for everyday friendships and important emotional connections.
A disabled person who is always surrounded by helpers may still be completely lonely in a true sense.
People with disabilities who cannot be left alone often actually crave solitude.
The flip side is that while some disabled people actively desire to be alone, others are unable to fulfill that wish for a variety of practical and perceived reasons.
Although many people with disabilities can care for themselves completely unaided, some require frequent or daily direct assistance from others to do the things we all do: bathing, dressing, toileting, cooking, cleaning, etc. But because of their physical impairments, some people with disabilities cannot do it alone. Under the best circumstances, people who are quadriplegic, have other significant physical disabilities, or have severe cognitive or intellectual disabilities can live independent lives, more or less without the constant involvement of others. They cannot isolate themselves to enjoy quality “alone time” or for more urgent needs, such as protecting themselves from a contagious disease such as COVID-19.
For these people with disabilities, loneliness may not be as big a problem as a deep-seated unmet emotional and mental need for solitude. Some people with disabilities need a lot of help and care, but others don’t need as much help as we or others think. Some of us actually have to argue or fight for alone time. For most people with disabilities, being alone and not being ignored is a gray area, a delicate balance between seemingly opposing but equally important priorities.
Many disabled people, perhaps most, are essentially content, no matter how much of a social life or loneliness they have.
Many of us are actually pretty happy with the amount of companionship and social interaction we have. At times, we have to contend with other people’s overly anxious beliefs that we need “socialization” and the conviction that there is nothing worse for a disabled person than being lonely. Frankly, some of us have been okay these past few weeks because for many of us, “social distancing” is preferable, or at least familiar. Loneliness suits some people, and it doesn’t suit others. Either way, the global pandemic has cast a unique new light on the relationship between disability and “loneliness.”
During the COVID-19 pandemic, the life-and-death issues facing people with disabilities are obviously much more pressing. How we all feel about isolation and being alone is less urgent. But it will be more important in the long term, both emotionally and practically. Understanding the different ways people with disabilities deal with loneliness has never been more important.