The Disability Spectrum & Why It Matters
June 27, 2022 - Written By: Aston Martinez
Disability is often seen as a binary “check yes or no” matter - either you’re disabled or you’re not. This simply isn’t the case, and recognizing that there are so many different variations of disabilities - even for one individual from day to day - is an important step toward cultivating a world with true inclusivity, equity, and accessibility.
Ability + Barrier = Disability
Before we move on, I’d like to introduce you to the disability equation posed by Sarah Horton and Whitney Quesenbery in their book, “A Web for Everyone”: Ability + Barrier = Disability.
Barriers for disabled people can come in a wide variety of different forms, much like the obstacles everyone encounters in life regardless of ability. The most common barriers faced by disabled people include:
Attitudinal, which is all about how the views of others impact the disabled person. This includes stereotyping, stigma, prejudices, biases, and discrimination. These attitudinal barriers can lead to a lack of accessible services and support.
Communication barriers often occur for those with conditions that cause visual, auditory, or cognitive impairment. For example, accessing and reading written documents or messages can be particularly difficult for those with visual impairments.
Physical barriers involve aspects of the environment that hinder access to buildings, services, or activities. For example, buildings or areas that can’t be accessed by wheelchair users due to curbs or stairs that block them from reaching the entrance.
Policy barriers occur as the result of laws and regulations that impact those with disabilities. For example, it would be a barrier for a qualifying person with disabilities if they are denied access to much-needed federally funded support programs.
Programmatic barriers are barriers that limit or hinder the delivery of healthcare services to a person with disabilities. For example, if someone has a mobility impairment and their provider’s mammography machine requires patients to stand up, the lack of accessibility to that screening service would be a programmatic barrier.
Social barriers occur when something about the conditions in which we live, learn, grow, and work contribute to decreased functioning. For instance, those with disabilities are more likely to be unemployed, have a yearly income of less than $15,000, and experience violence in childhood.
Transportation barriers occur when there’s a lack of adequate transportation options for someone to be functional and/or independent. This could include issues like living somewhere that lacks public transportation options or being unable to afford a wheelchair-accessible van.
What It Means to Say Disability Is a Spectrum
By this point, we’re used to viewing certain properties as existing on a spectrum, such as Autism, gender, and sexuality because there are too many different variations to sum them up with a binary view. Similarly, disabilities and barriers are far too complex to sum up with a binary view.
The Autism community often says, “If you’ve met one person with Autism, you’ve met one person with Autism” which perfectly highlights the idea that each person experiences autism vastly differently. Being disabled is incredibly similar in that each person with a disability has different symptoms, experiences, and barriers. Even among people with the same disability, one may have extreme trouble with specific barriers or symptoms, while another might not struggle with those at all.
It’s important to recognize that this spectrum is not a linear color gradient, but rather more like a color wheel. Much like one person isn’t more/less autistic than another, one person with disabilities isn’t more/less disabled than another - they’re simply disabled in different aspects of functioning.
How badly an individual with disabilities struggles with certain symptoms or barriers can also fluctuate greatly from day to day. Let me give you a quick example scenario:
Lauren has a severe autoimmune condition, though you’d never guess it if you came across her on one of her good days. You’d see her walking with a pep in her step, flashing a bright smile to everyone she sees, and seeming to function like a normal, healthy young woman. However, those good days occur once in a blue moon for Lauren.
The rest of the time, she deals with debilitating pain and symptoms that make it difficult for her to function at the same capacity as a healthy person. Some days, she feels decent physically but struggles a lot with brain fog and cognitive performance. On other days, she feels physically ill but retains decent cognitive performance.
During severe flare-ups, she experiences muscle pain and fatigue that makes it difficult for her to get out of bed and walk, often forcing her to use a wheelchair or cane to get around. It’s much harder for her to leave the house to go grocery shopping or pay bills during these flares, especially since she lives too far away from the nearest bus stop and can’t fit her wheelchair in her car.
Lauren doesn’t stop having a disability on her good days. However, since she seems young, healthy, and able-bodied from an outside view, she’s often accused of faking her health conditions, exaggerating her symptoms, or using mobility aids for attention.
Lauren’s situation is a common one among the disabled community. Her needs and barriers fluctuated, varying in intensity and which areas of function are impacted. She even sometimes had days in which she felt relatively normal and healthy, but that didn’t take away the fact that she still has a disability. All of these complexities could never be accurately captured with a binary or linear scale.
Her example also brings to light another important point - you cannot accurately determine whether someone is or isn’t disabled just by looking at them. There are many social stigmas and stereotypes that people with disabilities are often subjected to, and the idea that one must outwardly appear disabled in order to actually have a disability has been one of the most common attitudinal barriers.
Many of us have conditions that aren’t noticeable just by looking at someone, which we often call “invisible illnesses.” Moreover, we shouldn’t have to outwardly demonstrate to the general public that we’re sick and in pain at all times to be believed. We should be free to take full advantage of our rare good days - and free to use whatever aids and assistance we need on our bad days - without fear that we’ll be accused of being deceitful.
To recap, looking at disability through a binary or linear lens:
Massively oversimplifies complex diseases, circumstances, and life experiences.
Perpetuates misconceptions and stereotypes.
Fails to account for unique or fluctuating factors.
Does not help us find meaningful solutions to barriers or determine what kind of support and accommodations would truly help those with disabilities.
Creates even further barriers by perpetuating misconceptions and when used in determining treatment approaches, policies, and Diversity, Equity, Inclusion (DEI) solutions.
Opens the door to measuring disability on a sliding scale of “least severe” to “most severe”, which invalidates the struggles faced by those who weren’t deemed severe enough, and can also prevent them from receiving care, support, or services they genuinely need.
By understanding the concept of disability as a spectrum, we pave the way for measures that are truly more equitable for people with disabilities. It helps us understand that we can’t expect disabilities - or disability-related experiences, policies, and programs - to have a one-size-fits-all solution. It’s time to recognize the diversity within the disabled community if we truly want to create an inclusive and accessible world.
References and Resources
CDC. (2020, September 16). Disability and health disability barriers. Centers for Disease Control and Prevention. Retrieved from: https://www.cdc.gov/ncbddd/disabilityandhealth/disability-barriers.html
Horton, S., & Quesenbery, W. (2015). A Web for Everyone: Designing Accessible User Experiences. Rosenfeld Media.
Silverman, A. (2019, November 22). Is disability a spectrum? Disability Training, Research & Understanding People with Disabilities. Retrieved from: https://www.disabilitywisdom.com/2019/11/22/is-disability-a-spectrum/
Aston Martinez is a writer, community-based activist, and aspiring public speaker. She lives with multiple rare diseases, and she's on a mission to bring more awareness and fairness to the rare disease community. She's also the VP of Content for Habit Nest and has a passion for writing fiction!