When strangers first discover that I am blind, one of the first questions they often ask is “How much can you see?” or “So can you see anything at all?”
On the other hand, some people assume that if you self-identify as blind, you must be “totally blind.” These are the folks who accuse the blind person of “faking” if they use a cane, yet can see to move around a silent obstacle.
Most disabilities can be classified into some sort of severity ranking. We tend to be fond of subclassifying people, first by type of disability, and then by (perceived) severity. So, many neurological disabilities are graded into mild, moderate and severe. People with physical disabilities might be labeled according to their degree of motor impairment. People with impaired vision get classified according to the amount of functional vision that remains. And so on.
These severity labels are common in medical and educational settings. But they have several problems. The problems with “functioning labels” have been emphasized in the autistic community, and many of the issues autistics point out about functioning labels can also pertain to other disability groups. Specifically, severity labels can be problematic if they:
- Oversimplify: Disabilities are rarely one-dimensional, but instead have multiple dimensions which may or may not be correlated. For example, autistic people can experience varying levels of impairment in social communication, motor planning, and sensory processing areas. Someone could be severely impaired in one area but mildly impaired or unimpaired in others, or equally impaired in all areas. So, the autism spectrum has been described as more like a color spectrum than like a brightness spectrum. Similarly, intellectual disabilities often cover two dimensions, “intellectual functioning” and “adaptive skills.” Someone with a visual impairment may have great visual acuity, but a very narrow visual field, or vice versa. Severity labels often oversimplify by treating a disability as a single construct.
- Are treated as constants: The impact of disabilities can change from setting to setting, day to day, or year to year. Someone may be highly disabled in one setting but only mildly disabled in another. People might have episodic flare-ups in symptoms or periods of remission. Severity labels ignore these nuances.
- Used to deny support needs: Assistive devices and supports can benefit many people with disabilities regardless of severity. However, because such devices and supports are scarce, they tend to be given only to people deemed as having the most severe impairments. For example, braille literacy can benefit people who are physically able to read print but cannot do so efficiently or comfortably, yet many school systems only offer braille to children who cannot read print at all. On the other hand, some supports may be denied to people labeled as too “severe” to benefit, such as augmentative and alternative communication (AAC) devices.
- Used to rank people’s human rights: Too often, people with more “severe” disabilities are treated with less dignity or respect than people with “milder” disabilities. This may happen consciously or unconsciously. For example, a parent may overshare details about the life of a child with “severe” autism and justify it by stating that their child would not understand the privacy violation. In other circles, people with milder visual impairments may be asked to guide or “help” those with total blindness, in a paternalistic way
- Used to make assumptions about quality of life: People with more severe disabilities do not necessarily have worse quality of life than people with milder disabilities. In fact, people with milder disabilities may face unique struggles for identity, acceptance, and support that people with more severe disabilities get automatically from disability communities.
So, should we keep classifying people according to the severity of their disability?
As someone with “severe” blindness, I wouldn’t mind just calling all legally blind people blind, or all autistic people autistic, and doing away with the focus on severity. I recognize that descriptors like “blind,” “Deaf,” and “autistic” carry positive cultural connotations and that people benefit from being considered part of these groups, regardless of how severe their disability is.
But, some people would argue that dropping severity labels altogether is itself an oversimplification, or an erasure of parts of the disability experience. Some people choose to call themselves “visually impaired” because they consider their experience with useful low vision qualitatively different from the experience of a “blind” person.
As with the debate over person-first vs. identity-first language, it is important to adopt the language preferred by the individual. However, there are a few lessons to be learned about severity labels in general. These include:
- Instead of asking about severity, ask about support needs. For example, instead of asking “How much can you see?” ask, “Are you a braille user?” or “Would high contrast help you navigate?” Don’t ask if an autistic person is “high-functioning” or “severe” but you can ask if the person prefers to communicate by speaking, typing or sign (or a combination depending on the setting).
- Recognize that supports typically meant for people with more severe disabilities can also benefit people with milder disabilities. People who can walk short distances might use a wheelchair for longer distances. People who have some residual hearing might still sign, and people who can navigate familiar environments visually might still use a cane in unfamiliar environments, at night, or when they want to easily disclose blindness to others.
- Above all, recognize that a person’s worth and potential for happiness is not defined by a severity label.
This was fabulous. Thank you for being you. And for perking up my Friday with some interesting food for thought.
Very well put! Thank you for showing solidarity with the autistic community, as many other disability communities don’t like to be associated with us. I shared your post on Twitter.