Recently I was talking with a colleague who just came back from a trip to India. She mentioned the contrasting levels of disability inclusion that she saw in different places within the country. It made me think about the differing types of inclusion and exclusion I have encountered in my own experience as a disabled person, a researcher, and an inclusion trainer.
Inclusion is not a binary “on/off” concept. People have differing emotional reactions to disabilities, which fuel distinct behavioral reactions that can sometimes include and exclude at the same time. I have come to observe that inclusive attitudes often evolve in stages, though. As people learn more about the disability experience, they can move from one stage to the next. I also believe that disabled people can move through stages in their own self-acceptance that roughly parallel the stages that a nondisabled person might traverse.
Here is one possible five-stage model of inclusion. Like all stage models, this one may not apply to everyone’s experience. But I do think it can help us understand how many people’s reactions to disability can evolve over time. I am very interested in other people’s feedback on this five-stage model.
Stage 1: Antipathy and Active Exclusion. People in this stage reject disabilities and actively bar disabled people from their communities. Fortunately, most people don’t start out at this stage. But when they do, their behavior is usually motivated by strong emotions such as fear, disgust, contempt, or envy toward disabled people. They may believe that disability is a curse, that it will spread from person to person, or that disabled people drain resources or take up undeserved special treatment. Institutionalization, eugenic policies, and disability hate crimes are firmly planted in this stage. For a disabled person, Stage 1 may be characterized by a strong sense of self-loathing, as the individual may view their disability as a blemish on their own character.
Stage 2: Tolerance or Passive Exclusion. For most people in Stage 2, disability isn’t really on their radar. If they encounter a disabled person, they may tolerate that individual, but may not make a real effort to include them. Communities at Stage 2 don’t actively exclude disabled people, but they also don’t incorporate accessibility or universal design, leaving many people passively excluded. An employer at Stage 2 might consider a disabled job applicant, but ultimately hire a nondisabled competitor who seems less complicated and easier to train. Most people without disability contact start out at this stage. For the disabled person, Stage 2 may mark an attitude of minimization, where the individual might conceal their disability (if they can) and generally distance themselves from disability communities.
Stage 3: Helping and inspiration. People in Stage 3 include disabled people, but mainly out of a sense of pity, obligation, or a desire to help. People in Stage 3 may feel emotions of warmth or affection toward disabled people, but they do not yet see disabled people as true equals. They may be motivated to include disabled people in order to relieve their own distress or sense of obligation, and as a result, they may want to control the interaction and be in charge of deciding *how* to include the disabled person. Family members of disabled people can be at any stage, but they are at particular risk of getting stuck in Stage 3; they may be pulled into this stage by their healthy feelings of love and affection toward their disabled relative, but then have trouble moving to higher stages where their relative is seen as an equal. Employers in Stage 3 may be willing to hire disabled people on an unpaid or temporary basis as a charitable act, but they don’t recognize the benefit of hiring disabled workers for their own bottom line. People in Stage 3 may also be big consumers or producers of inspiration porn, exaggerated depictions of disabled people doing ordinary things. Underlying both helping and inspiration porn is the sense of disabled people as “other,” people “not quite like us” who are either helpless or superhuman. For a disabled person, meanwhile, Stage 3 might involve behaviors of overcoming or overcompensating for disability, still striving to distance oneself from disability and the associated community.
Stage 4: Individual Equality. People who have moved into Stage 4 begin to recognize that disabled people deserve equal treatment. They recognize disabled people as people like them, and understand the importance of respect and dignity in their interactions. Employers at Stage 4 will hire disabled people who are genuinely qualified for the job, and they will be willing to make accommodations on an individual basis. However, people at Stage 4 may not yet recognize the value of cross-disability activism or universal design. They may be willing to make accommodations for individual disabled people in their lives, but may not anticipate the need to make environments accessible for other disabled people who might come in the future. Disabled people at Stage 4, meanwhile, will advocate for their own needs and demand equal access for themselves, but they may not get involved in broader activism.
Stage 5: Inclusion as Social Justice. People at Stage 5 recognize inclusion as a universal imperative. They recognize the integral role that disabled people play in society, and are motivated to design things so that people with all kinds of abilities or impairments can participate. Employers at Stage 5 have inclusion committees and a strong plan for inclusive hiring. The autistic blogger who writes about autism while ensuring that all photos and videos are captioned for blind and deaf visitors is at Stage 5. People at Stage 5 also recognize the intersectionality between disability and other social identities. Disabled people at Stage 5, meanwhile, will engage in collective activism even if the particular issue may not impact them personally, if it impacts other members of the disability community.
In my experience, people can often move from lower stages to the upper two stages through exposure and education. I am interested to investigate some of the factors that might guide that process. For example, some people (like my husband) skip the helping stage entirely, and move fairly quickly from neutral tolerance of disabled people (Stage 2) to respect and equality (Stage 4) and, sometimes, Stage 5. For other people, the helping stage seems to be a necessary part of their inclusion journey. And, in fact, the helping stage isn’t always bad. For a person or a community in Stage 1, where negative feelings toward disabled people dominate, getting them to Stage 3 (the helping stage) may be a real sign of progress.
There is much that we still don’t know about how to teach disability inclusion and acceptance. But, one lesson of this stage model (to the extent that it accurately describes people’s attitudes toward inclusion) is that intervention may need to look different depending on the current stage that an individual or a community occupies. For a community where disabled people are actively shunned (Stage 1), tolerance or helping may be the short-term goal. For a person or a community stuck in the helping stage, in contrast, a good goal may be aiding them to recognize the equal personhood of disabled people. And for a person or community in Stage 4, there is room to grow into Stage 5. A one-size-fits-all inclusion campaign is unlikely to lead to progress across the board. Instead, as advocates, we need to adjust our approach based on the attitudes and concerns of the particular communities in which we work. A customized approach is likely to make the most impact.