A disability is a mismatch between a person’s abilities and their environment
Some people describe developmental disabilities like autism or ADHD as a “disease.” When autistic children receive intensive training in social skills, it’s called “therapy” instead of teaching. They are often given medication and special diets, just like people with an illness, and researchers are continually trying to develop more.
But developmental disabilities are not a disease. They are a mismatch between a person’s capabilities and the requirements of their life situation and culture.
The idea that both a person’s traits and their environment combined constitute a disability, and their functioning can’t be understood without considering their environment, is called the social model of disability. This concept is widely understood by people with disabilities, but often misunderstood by the general public. I will now explain what the social model means, and why it matters.
1. Culture turns human traits into disabilities.
Dyslexia is a disability in a highly literate culture like the present-day United States, but people with the same genetic predispositions and brain development trajectory would not have been disabled had they been born before the invention of writing. The hyperactivity characteristic of ADHD impairs functioning more in a culture where people sit for hours at a time than in a nomadic society, or a hunter-gatherer society where people continually walk or run.
Would today’s computer whizzes be seen as having any special talent if, with the same neurological profile, they were born into an illiterate tribe in Borneo, or a noble family in the Middle Ages? The modern world, with its numerous specialized roles, opens up many opportunities for a person to display talent. But the more opportunities there are for talent, the more opportunities there are for the opposite: if there can be computer “whizzes,” there can also be computer “dunces.”
We can draw two conclusions from these examples.
First, a person with a disability is someone who is below average in some ability, so much so that they cannot handle without help some area of life in that culture, large or small.
Second, the more opportunities a culture offers, the more disabilities will appear. The more arts and sciences, crafts and jobs exist in the world, the more opportunities for mismatch there will be, and thus the more “disabilities” we will find.
2. A disability only hurts functioning to the extent that the culture lets it.
Even the most physically-based disability is impairing only to the extent that the culture allows it to be. In a culture without paved roads, wheelchairs, and wheelchair accessible buildings, being unable to walk would mean being unable to go out in public, a very severe impairment. In a culture with these technologies, being unable to walk is much less impairing. Similarly, Braille means that being blind no longer means being unable to read and write. Sign language means deaf people can speak a full, rich language instead of whatever jury-rigged system of home-signs and gestures they can cobble together with their families. All these disabilities involve an obvious physical inability, but it would be profoundly misleading to talk about the severity of these disabilities without reference to the accessibility of their environments. All the more so for invisible, more ambiguous, brain-based disabilities.
At this point, you may be wondering: if culture turns negative traits, or lack of positive traits, into disabilities, why isn’t every human imperfection a disability? We don’t think of being short, ugly, or selfish, as disabilities, but we think of slow learning, difficulty reading, and difficulty understanding social cues that way.
So what determines which weaknesses we treat as disabilities?
3. A negative trait is considered a disability when it affects a culturally valued trait that everyone is expected to have.
If a trait isn’t much valued, its absence or impairment isn’t considered a disability. A child who can’t read may be diagnosed with a reading disability, but a child who can’t draw won’t be diagnosed with an “art disability” and forced to take remedial art classes. That’s because U.S. culture, on the whole, deems reading, but not art, as necessary for a successful life. The ability to navigate without map or compass, or survive and find water in the bush, are necessary survival skills in some parts of the world. But in America, where most people never need or develop these skills, their absence is not considered a disability.
The absence or impairment of a trait is only considered a disability when everyone is expected to possess it. For example, height is considered a desirable trait; taller people are considered more attractive (and taller men may receive higher salaries). However, being short is only considered a disability for a would-be basketball player. Similarly, although beauty is valued, we don’t expect everyone to be beautiful, nor do most careers or social roles require it. Thus, an ugly person would not be considered disabled unless he or she aspired to be a model. By contrast, we deem intelligence and its imperfect proxy measure, IQ, to be necessary for everyone regardless of profession, and so consider a significantly below-average IQ to be a disability.
The arbitrariness of what we consider a “disability” is obvious when we compare the social consequences of being extremely ugly versus being autistic. Both ugly and autistic children can be ostracized and bullied by their classmates, and left friendless, while teachers look the other way. Ugliness and autism are both inborn characteristics (one a visible characteristic of the body, the other an invisible characteristic of the brain), and not a matter of choice. Yet we deem ugliness a normal but undesirable human trait, and autism a social disability. We often judge those who bully ugly children to be shallow and cruel, but justify those who bully autistic children (“the autistic child did something annoying to provoke it” or “the autistic child lacks the social skills to handle bullies”). We push autistic children into intervention programs at the earliest possible age to improve their social skills, but we don’t force their ugly peers into fashion, grooming, or surgical interventions to improve their appearance. (Do not misunderstand, we treat ugly people terribly. But we do so in a different way than we mistreat those we judge to have a disability, even when the person’s functioning is affected in the same way).
4. A disability is often more extreme than typical, not fundamentally different.
Sometimes a developmental disability means being at the extreme end of the bell curve: having far more or less of a normal trait than the average person. Everyone has trouble concentrating when bored; people with ADHD more so. Everyone has more trouble hearing speech in the presence of background noise, like tap water running or other people talking. People with auditory processing disorder have so much difficulty they often can’t piece together the meaning. This is why everybody gets distracted many times per day, but not everybody has ADHD; and everyone stims (e.g., by tapping their foot or twirling their hair), but not everyone is autistic.
In other words, having a disability often means having more trouble doing something that’s hard for everyone, more often. That’s one reason for the “curb cut effect”: assistive technology for people with disabilities often helps everyone. Inversely, inventions designed to make tasks easier for the general population disproportionately help those with disabilities.
This is one of the key differences between a developmental disability and a disease: a disease is different in kind from a normal, healthy state. It is something that comes from the outside and changes a person, preventing them from who they “naturally” are “meant to be.” A disability is a normal, healthy state; it’s just a person who “naturally” is “meant to be” outside the normal range on the bell curve. When we look at research on functioning in autism, we often find that common claims of difference in kind do not hold up. Instead of abnormal patterns of language development, for example, we merely find a higher rate of language delays.
5. A disability is not a permanent, lifelong state of consistent severity.
A disability can be more or less of a problem depending on a person’s environment.
A child may be able to pay attention and complete his schoolwork with one teacher, but not another. A person’s abilities might be adequate for the demands of home, but not school, or for high school, but not college. (Many people are diagnosed with ADHD during the transition from high school to college, when they become overwhelmed without the structure from parents and school they once depended on). Many people with dyslexia struggled in school before achieving success as an entrepreneur.
People’s disabilities may become more severe, or even become visible for the first time, when changes in their environments overwhelm their ability to cope, creating what ADHD expert Laurie Dupar calls a “tipping point.” These include changes in:
- The physical environment (such as moving to a new house);
- Life roles (e.g., switching to a new level of schooling or being promoted at work);
- Family dynamics (e.g., the birth of a new baby);
- Physical health (e.g., menopause);
- Sleep (e.g., prolonged sleep deprivation);
- Technology usage (e.g., phone or internet usage that disrupts analog organizational strategies without offering a replacement).
In other words, a person’s disability can become more severe without anything about their brain or their abilities changing, if their environment places new demands or prevents them from using effective coping strategies.
And a person’s disability can become less severe without anything about their brain or abilities changing, if their environment accommodates their needs.
A person always has the same type of brain, but they does not mean they always have a diagnosable disability, as I explain here:
The Diagnostic and Statistic Manual of Disorders (DSM), which provides the basis for diagnosis, emphasizes that ADHD should be diagnosed not based on whether a person displays frequent inattention, hyperactivity, and impulsivity, but based on whether these disable a person and causes them distress. A person may have an ADHD neurotype (for example, dysregulated dopamine systems in their brains, delayed prefrontal cortex development, and reduced prefrontal cortex activity during executive function), but they may only have the disability ADHD when they can no longer compensate for these traits or their environment makes these traits a sufficient liability to cause disability and distress. Thus, a person could theoretically go back and forth over their lives between having ADHD and not having ADHD!
We’ve already seen that at the cultural level, the environment determines whether a certain type of brain becomes a disabled brain. Now we see that on an individual level, a person’s environment determines whether they have a disability at all!
6. The environment is more than just exposure to toxins.
To hear autism researchers talk, you’d think that the environment was nothing but exposure to toxins or “risk factors.” Was the mom exposed to lead, or power lines, or antidepressants?
But as any disability advocate will tell you, the environment also includes:
The culture of the time period, including its technology level, and its level of specialization/diversity of roles (the greater the specialization and role diversity, the more disabilities can exist).
The built environment — the architecture, including the ambient lights, sounds, traffic, and crowds.
The social environment. How do parents raise their children? How do schools educate them? How much time do children spend with their immediate family, extended family, peers, elders, the broader community? How are children expected to behave, and what behavior is considered “socially skilled?” How are adults expected to behave, and what behavior is considered “socially skilled?” How tolerant is the culture of deviation from the norm?
The cultural environment regarding disability. Attitudes towards people with disabilities in general, and the disabled person’s specific traits in particular. The culture’s attitude toward, and explanations for, human differences. The ways that the culture attempts to ameliorate disabilities. The degree to which people with disabilities are either integrated into public life, or isolated from it.
The work environment. What jobs are there? How are people hired? Are job interviews required, and if so, what skills do you need to pass them? How important are connections? How important are skills and educational background? What laws or cultural norms prevent discrimination against job applicants or workers with disabilities? What workers’ rights protections exist?
Assistive technologies. Are there wheelchairs? Sign languages? Closed captions? Curb cuts? Prosthetic limbs? Hearing aids? Glasses?
(How often have you seen these factors examined in an autism etiology study? Most likely, rarely or never).
Summing Up the Social Model of Disability
So, to sum up, disabilities are:
- An impairment in a culturally-valued skill that everyone is expected to have.
- An impairment that the culture in general, and the person’s individual environment, does not accommodate.
- Fluid and impermanent. The disability can become more severe, less severe, disappear, and reappear over a person’s lifetime.
Why does this matter?
1. People with disabilities no longer need to feel inferior.
If a developmental disability stems only from a person’s traits, then they may feel flawed. All their problems and struggles, after all, stem from their own traits, which they may be unable to control. As one blogger explained:
Growing up with a disability, you were taught to fight yourself, to overcome yourself. It’s even more exhausting than the disability itself. When you see great swaths of yourself, many essential traits, as the enemy, you come to see yourself as the enemy. Even if no one told you to, no one wanted you to…The social model of disability changes the story. It’s no longer you against yourself. It’s you against society…you are no longer the enemy, or the broken thing to be repaired. You’re the underdog, the embattled hero.
2. There is no excuse to blame every problem on the disability.
If a child with ADHD is placed in a boring, insufficiently challenging classroom, their difficulties focusing may be blamed on their intrinsic distractibility rather than the unsuitable environment. If the child is lucky enough to receive accommodations, they will likely be cosmetic adjustments, such as extra time on tests, rather than a solution to the real problem — such as providing more engaging or challenging work, or attention training.
An adult working a dead-end job may not try to switch to a more fulfilling career if she thinks her learning disability is responsible for her poor performance. An overworked Blackberry-juggler who arrives late at meetings without necessary belongings may believe the demands placed on him are reasonable, but his disability prevents him from handling them effectively. If he seeks out stimulant medication and ADHD coaching, he may develop better organizational skills. But will he realize he is still dissatisfied with a lack of work-life balance that would drain anyone, ADHD or not?
Ironically, recognizing the essential role of our environments in our functioning lets us take responsibility for achieving the right fit between ourselves and our life circumstances. We can choose to make small changes to our environments and the way we operate in them, ask for help, or leave in search of a better fit.
3. Instead of giving up on a person’s ability to succeed in school, work, or live independently, we can help them succeed by making small changes to their environments.
If we see a person’s impairment as stemming entirely from their body or brain characteristics, we will not see the potential of social or technological support to help, and may deem it too expensive. By contrast, those who recognize the importance of the environment have invented clever ways to increase opportunities for choice, independence, and community integration possible. Some examples from Scope, a UK disability support organization:
A teenager with a learning difficulty wants to live independently in their own home but is unsure how to pay the rent. Under the social model, the person would be supported so that they can pay rent and live in their own home. Under a medical model, the young person might be expected to live in a communal home.
The practice described here, “supported decision making,” is an alternative to guardianship, where a person with disabilities designates trusted people to advise him or her on issues like housing, health care, and finances. Unlike with guardianship, the person with disabilities makes the final decision.
A child with a visual impairment wants to read the latest best-selling book, so that they can chat about it with their sighted friends. Under the medical model, there are very few solutions. A social model solution makes full-text audio recordings available when the book is first published. This means children with visual impairments can join in cultural activities with everyone else.
4. Researchers cannot hope to understand or “cure” disabilities by looking only at a person’s traits and ignoring the environment.
Much autism and mental health research funding goes towards understanding the genetics and brain states involved in these disabilities, but these studies rarely examine the social and cultural environments that make these traits disabling. This blind spot occurs in part because of the researchers’ training. Neuroscientists, academic psychologists, and psychiatrists do not learn how to study parenting style, classroom dynamics, peer behavior, or daily sensory experiences. Those who study animals may, indeed, have been attracted to the simplicity of their brains, and their lack of messy, complex variables like culture. However, an approach to understanding and remediating disabilities that only considers half of their ingredients cannot succeed.
For example, it makes no sense to study diagnostic stability or changes in severity while looking only at changes in a person’s traits. A person can gain or lose a disability either because of changes in their abilities or changes in their environments. How can you determine whether the child’s intrinsic traits truly became more “severe” without first knowing whether the child, environment, or both changed? The same argument applies to changes in severity. For this reason, studies on autistic youth who lost their diagnosis (so-called “optimal outcome”) are fatally flawed in their design.
Many researchers claim that science has finally put the old “nature vs. nurture” debate to rest: all traits are a result of interactions between genes and environment. They just seem to forget this principle when it comes to researching developmental disabilities.
Autism researchers are, I think, afraid to look at parental behavior in particular because they want to avoid appearing to blame parents for their children’s disabilities, the way Bruno Bettelheim once blamed so-called “refrigerator mothers” for their children’s autism. As Lynne Soraya explains, blaming parents harms not only the parents, but also their autistic children. However, I believe it to be possible, and necessary, to tactfully investigate how parenting practices interact with autism traits — for better, as well as for worse.
What the Social Model of Disability Does Not Imply
1. It does not mean denying a person’s difficulties.
People with disabilities know we’re different. We don’t deny obvious impairments, like being unable to walk, see, or hear. With developmental disabilities involving functional limitations that are subjective, culture-dependent, and interactive, such as social disabilities in autism, it’s harder to tell how much of the problem comes from the person’s intrinsic traits and how much from the environment. However, autistic people acknowledge they have difficulty with social functioning.
Moreover, people with disabilities know that we require more from the environment from other people in order to function. That makes us less adaptable — a disadvantage. Relying on specific technological or social support makes us more vulnerable because if we lose these, we may no longer be able to function.
Our educational, medical, and assistive technology needs may be expensive, to us or to others. And disabilities costs more than money. They drain time and energy. We have to work harder to accomplish our goals, both to manage our disabilities and to surmount social obstacles. We need ingenuity to come up with strategies to work around disabilities, to figure out when and how to disclose them to others, and to navigate the medical and social service systems when necessary. We need access to accurate information about our conditions, which can take years to find.
So yes, disabilities impose handicaps on us. That doesn’t mean people with disabilities can’t accomplish our goals in life. It simply means we start out competing on an unequal playing field (if you’ll permit the cliche). That makes it all the more important to find or create an environment where we can function. Only then do we have equal opportunity.
2. It does not imply that a person with disabilities should never learn new skills or improve their areas of deficit.
The most common misconception about autistic adult disability advocates is that they think autistic children should never learn new skills, like speaking, making friends with age peers, self calming, or coping with overwhelming sensory input. They mentally translate “we don’t want to cure autism” into “we don’t want to change anything about ourselves at all, even if it would improve our functioning.”
But that doesn’t follow. It’s a straw man argument. A disability is a mismatch between a person’s traits and their environment. That means the person’s traits are still an essential part of the picture. Disability advocates are not suggesting that we blame all problems on the environment and ignore the person’s traits entirely.
Although Maxwell Sparrow (formerly Sparrow Rose Jones) likes some aspects of autism, he would like to learn to function better in several areas of life [link goes to my post, quoting him, because his original post is no longer online]:
“I would like to not have dyspraxia — I don’t want the clumsiness, I don’t want the dysgraphia, I don’t want the difficulty in controlling my internal ‘thermostat,’ I don’t want the topographical agnosia.
I would like to not have prosopagnosia — face-blindness. It would be so nice to always be certain who I am speaking with. Recognizing people would be a real gift.
I would like to be able to follow and participate in a group discussion. I would like to be able to interact with people without regularly, unwittingly pissing them off. I would like to not live with constant stress and anxiety. I would like to be able to read the body language of others; I would like to have better control of my own body language. I would like to have a higher stress threshhold and a body that doesn’t respond to stress by turning off abilities: speech, vision, movement, hearing. I would like to not have meltdowns and shutdowns. I would like it if human contact — touch, smell, eye-gaze — were not so painfully difficult for me to endure.
I would like to be able to secure and maintain employment.
If this is a cure for autism, I want it.”
Maxwell, I think, wants the security that comes from reducing the severity of a disability. The greater a person’s abilities, the less support they need from their environment, and the more adaptable they become.
3. It does not mean we think that if we made certain social changes, all disabilities would disappear forever.
Some less-than-careful advocates seem to argue that if we just made our schools sufficiently stimulating, or reduced our consumption of fast-paced electronic media, loud music, and bright lights everywhere, all ADHD would disappear. (Similar anti-technology arguments exist for autism). I disagree.
People with developmental disabilities like autism and ADHD really are different, if only by being more extreme in their traits. As a result, they are like canaries in the coal mine, reacting more strongly to unhealthy features of our environments.
But if we made our schools fast-paced and stimulating enough to fulfill those now diagnosed with ADHD, with their constant need for mental stimulation, many other children would be overwhelmed. Conversely, if we reduced lights, sounds, and smells in public spaces enough to make them comfortable for most autistic people, everyone else would be understimulated, which might make them bored, de-energized, or restless. People have different sensory, intellectual, movement, and social interaction needs in order to function well, and sometimes these conflict. Disability advocates call this problem “conflicting access needs.”
No one-size-fits-all environment will ever fulfill everyone’s access needs. Some people will always have to adapt. Realistically, in majority-rule democracies, that means most schools, businesses, and public places will best serve the needs of the majority, and those in the minority will have to adapt more, or create their own spaces.
Advocates for people with disabilities merely want to shift the burden of who adapts most. Currently, people with disabilities, who are least capable of adjustment, are called on to do all the adapting. It would be fairer if those more capable of adjustment carried more of this burden. But ultimately, people with disabilities and their environments must adapt to each other.