With April being Autism Acceptance Month, there is a lot of information about autism circulating the internet. Today I’m going to break down a framework called “Models of Disability” (2), a tool to define disability, that can help you discern what information and perspectives align with your values and goals. I’m distilling the most pertinent points of this disability theory lens that I find to be the most impactful and helpful in my advocacy for my autistic child and myself (ADHD, Autistic, late diagnosed).
I use this framework to discern not only information I see online, but also the recommendations I receive from providers, friends, and family. I hope this will help you do the same.
A little about me and my positionality:
I am Megan McCoy Baker, a board member at CAYR, and I’m a general education classroom teacher with a master’s degree in secondary education. I recently took a course on disability advocacy and activism, and I’m synthesizing the highlights for you from the lens of an affirming caregiver of an autistic child. This framework has helped me evaluate and ask the right questions for my kid and our family. Models and approaches to disability can evolve and I often am faced with multiple competing ideas at once. Having the language to describe and discuss what I see has helped me understand the different perspectives.
Below I will be outlining the Medical, Expert, Charity/Tragedy, Economic, and Social models of disability along with some real life examples.
Quick disclaimer: The content of this blog, and our entire website, is provided for reference and educational purposes only. Our content is not meant to be complete or exhaustive or to be applicable to any specific individual's medical condition.
1. Medical Model
“The Medical Model places the source of the problem within a single impaired person, and concludes that solutions are found by focusing on the individual.” (2) Here are some main points about the model:
This point of view is not from actually disabled people.
Usually the aim is to treat the "symptoms" and/or find a “cure."
This has led to harmful institutionalization of many people (Willowbrook (1)(6) being a prime example)
This model can deprioritize the social responsibility of a society to care for and include disabled people. Instead of integrating and accepting disabled people, they are segregated from society with an aim to “fix” them, not to help them live fulfilling and comfortable lives.
Here's a caveat: the medical model can still be useful for autistic folks with high medical support needs. Autistic people often have co-occurring conditions as well that require medical intervention, like sleep problems, epilepsy, joint and mobility problems, etc.
My take-aways:
The Medical Model is useful for addressing medical needs with the person's consent– but it becomes problematic when autism is considered a medical disorder to be "cured" instead of a natural neurotype to be accommodated and accepted.
There is inherent ableism in “looking for a cure” and putting the sole onus on the disabled individual, as opposed to society working for more inclusion and acceptance. This is not to say that autism is not disabling or to not seek medical attention– in my experience, caring for my child's medical needs while affirming her autistic neurotype is extremely nuanced (the human experience is complicated!) but I hope that some of the points above are helpful in identifying beliefs and approaches rooted in the medical model.
In practice, I am intentional and vigilant when seeking out medical interventions for health concerns. I stay curious and ask a lot of questions when listening to providers so that I can view the recommendations through the medical model lens as well as the other lenses described below before making a decision. I would also recommend taking a notebook to every appointment to jot down notes and questions, and asking for a written summary after each provider visit (sometimes they won't give you one unless you ask!) There are many factors to consider, so I take time to process everything before making a medical decision.
2. Expert Model
This model is an offshoot of the medical model that “has tended to produce a system in which an authoritarian, over-active service provider prescribes and acts for a passive client.” (2) I’ve studied materials (7) from national organizations charged with providing care for disabled people and here are my thoughts:
This model is usually used from highly respected and official, governmental organizations and has an authoritarian stance.
Actually disabled and autistic people are not typically considered the "experts" on their own disabilities.
"Experts" discuss autism as a disorder as opposed to a neurotype and use person-first language.
Autistic characteristics are stigmatized and the "experts" essentially try to help families make their kids act like “normal” neurotypical children.
My take-aways:
How can someone be an "expert" in autism if they are not autistic, especially if their perspective goes against the general consensus of the autistic community? While #ActuallyAutistic culture typically rejects “Autism Spectrum Disorder” and opts for identity-first language (e.g., "Autistic"), many "experts" still refer to autism as ASD and use person-first language. This model is associated with a lot of deficit-based language– autism "experts" speak about typical autistic traits like reduced eye contact, stimming, and special interests as disconcerting problems to be dealt with. In general, it perpetuates an ableist, neuronormative approach to therapies and supports that does not align with my values.
In practice, I do not find this model helpful. I have personally found that getting information from disabled people or organizations that center disabled people has been the most helpful. I will listen to many perspectives but I do not believe everything I hear, especially when I hear deficits-based or ableist language (i.e discussing autistic traits as odd or undesirable, or approaches that are not culturally-responsive or trauma-informed.)
Another disclaimer: As an organization, we do not give medical advice and would never tell you to ignore medical professionals or "experts." However, the medical and expert models can perpetuate ableism and de-centering autistic voices, which contribute to systems that can cause harm. We encourage you to consider all models when interpreting information about autism so that you can ask questions and determine the best next steps for you and your family.
3. Charity/Tragedy Model
This model “depicts disabled people as victims of circumstance, deserving of pity.”(2) This model is generally used for fundraising organizations.
While this model can raise funds for equipment and other things that the state does not provide, the imagery and language used is generally offensive to disabled/autistic people.
In terms of Autism organizations, this is where you will normally see puzzle pieces and or blue imagery.
When you google "autism", these are some of the first organizations that pop up because they are popular and have big marketing budgets.
My take-aways:
This is another model that does not center the experience of disabled or actually autistic individuals, but rather focuses on the experience and inconvenience of caregivers. When we treat disability like a tragedy, we are perpetuating ableism. The idea that there is an "ideal" ability level and anyone who is disabled is tragically "less than" a non-disabled person is problematic. This line of thought also promotes a "hero" or "savior" mentality of those who are in helping roles.
In practice, organizations that use this model do not sit well with me and are generally not preferred by the autistic community. I generally avoid them. While I do recognize that autistic people with any and all support needs deserve support and care, and that requires lots of fundraising, as an autistic person I find fundraising materials using this model to be rather offensive. This model often perpetuates stereotypes and mistreatment of autistic individuals which can cause harm.
4. Economic Model
This model measures a disabled person’s value based on their ability to work. Under this model, disability is defined by a person’s inability to contribute to the economy through employment. Here's a quick rundown:
An example of this model in action is in this video, Autism: Aging Out. It's a documentary about autistic individuals and their families navigating life after aging out of the public school system and supports at age 21. There are some affirming pieces in that it acknowledges that autism is not a monolith, and that "if you’ve met one autistic person, you’ve met one autistic person." Also, actually autistic individuals are represented.
My take-aways:
I am not necessarily criticizing this model because it can facilitate skills training and workplace accessibility for disabled individuals, and often is an effective fundraising approach that is less problematic than the "charity/tragedy" model described above. However, this model can overlook disabled folks with higher support needs who cannot work. This can lead to culturally devaluing people if they cannot “contribute” and extreme exclusion like institutionalization.
In practice, I appreciate that this model can help autistic individuals in finding an occupation that they are passionate about and can provide supports and accommodations to learn the skills that they need to be employed in a job that they might enjoy. However, if we aren't diligent, this model can overlook the inherent value of disabled people. It can tie a person’s worth directly to what they can produce. If you're interested, there’s more discussion about this model in this article about the models of disability (2)
5. Social Model
The Social Model views disability as a “consequence of environmental, social and attitudinal barriers that prevent people with impairments from maximum participation in society.” (2) This is the model that you will see in advocacy and activism organizations like CAYR, in that we are working to create fewer systemic barriers for disabled people.
This model centers disabled voices, which is not the case in the other models.
The phrase “Nothing about us without us” is often used to express the necessity of listening to disabled voices.
It's called the Social Model because it puts the responsibility of inclusion on society, not on the individual. It's often seen as the "opposite" of the medical model, which puts the onus on the individual.
My take-aways:
This model highlights the dehumanization of other models of disability. In the video by a non speaking Youtube user, Silentmiaow, In My Language(4), points out that they speak a language like anyone else and that it is society that dehumanizes them.
In practice, I tend to lean toward using this model because it aligns with my belief that inclusion and accessibility are human rights, and disabled people are no less human than non-disabled people. However, it should be noted that disabled people with higher support needs sometimes criticize this model because it deprioritizes their actual medical needs. Their disabilities would exist regardless of accessibility, and often require medical intervention.
In Summary,
Now that you are aware of the different models of disability, you will see them everywhere! At least, that has been my experience. No one model has all the answers, and typically there are many different models at play. Using this framework has helped me evaluate what aspects of an organization, program, or advice will work for us and which will not.
My main takeaways are looking for representation and affirmation, and looking at disabled people as whole humans with inherent value, regardless of their skills or productivity.
Critics of the Social Model might say that it deters people from seeking services like therapies and medical interventions, but I disagree. It's not about refusing services and supports, it’s about how services are implemented, the attitudes and intentions behind them, and of course, the impact they have on your family. It's about making sure that we aren't asking disabled people to be solely responsible for their inclusion in society, and instead ensuring that society is putting in effort to include disabled folks through accessible supports and accommodations.
Sources:
*note, some of these resources are used purely as examples of different models of disability in practice and not representative of the views of our organization.
(1) Klacik, J. (2023, January 6). Willowbrook 51 years later: A look at history and modern advocacy. Disability Rights. https://www.disabilityrightstn.org/willowbrook-51-years-later-a-look-at-history-and-modern-advocacy/
(2) Models of disability: Key to perspective. (n.d.). https://www.theweb.ngo/history/ncarticles/models_of_disability.htm
(3) NHS. (n.d.). NHS choices. https://www.nhs.uk/conditions/autism/other-conditions/
(4) Silentmiaow. (2007, January 15). In my language. YouTube. https://www.youtube.com/watch?v=JnylM1hI2jc
(5) YouTube. (2022, December 9). Autism: Aging out | documentary offers helpful info for those with ASD beyond childhood. YouTube. https://www.youtube.com/watch?v=fje8s6TRKiI
(6) YouTube. (2023, March 27). The path forward: Remembering willowbrook - full documentary. YouTube. https://www.youtube.com/watch?v=ev80qEtp2u4
(7) YouTube. (2013, March 5). What is autism spectrum disorder?. YouTube. https://www.youtube.com/watch?v=0Pp8jcQ97pY
(8) Wolff, E. A., & Hums, Dr. M. (2017, September 6). “nothing about us without us” -- Mantra for a movement. HuffPost. https://www.huffpost.com/entry/nothing-about-us-without-us-mantra-for-a-movement_b_59aea450e4b0c50640cd61cf