INTRODUCING THE HOLISTIC MODEL OF DISABILITY
WHAT IS DISABILITY?
Before any meaningful discussion about disability can take place, we must first define what disability is. Because only when we use the same definition of disability, can we make sure that we are all talking about the same thing.
How one defines “disability” depends on the lens through which one views it. We call these lenses Models of Disability.
Disability models exist as tools for practical use. They aren’t just theoretical discussion points. Models of disability attempt to outline what disability is, and what causes it. This allows us to understand which problems disabled people face and why. It also provides a basis for how to improve their lives.
The currently most used models are the Medical Model of Disability and the Social Model of Disability. Let’s take a look at each of them.
THE MEDICAL MODEL OF DISABILITY
The Medical Model of Disability says that “A person’s impairment causes their disability.”
People who use the Medical Model of Disability see a person’s impairment as a medical problem to fix medically. That’s why it’s the MEDICAL Model of Disability.
As a result, people using the Medical Model of Disability aim to treat or cure people’s impairments. They try to do so with medical approaches like medication, medical interventions, and therapies.
In short: The Medical Model approach is trying to make the disabled person less disabled by changing them and/or their impairment.
PROBLEMS WITH THE MEDICAL MODEL OF DISABILITY
The Medical Model of Disability only considers a person’s inherent impairment. It disregards any other factors, which might disable a person.
Disabled people who are disabled by inherent factors exist. However, impairments that become disabilities with added social barriers exist, too.
People using the Medical Model of Disability may tell disabled people that social barriers don’t actually exist. They may also claim that disabled people just need to change to fit the world. That’s because they believe that their disability stems only from their own impairment.
This approach prevents social barriers from being recognized and taken apart. It also prevents disabled people from receiving necessary accommodations. In the end, it keeps social barriers in place and forever keeps disabled people disabled by them.
Applying the Medical Model can also lead to internalized ableism in disabled people. They take on the belief that disability itself is bad. As a result, they believe that they are bad. Finally, they believe that they are a burden. This can have negative effects on disabled people’s self-image and mental health.
Using the Medical Model also leads to disabled people being subjected to non-helpful, or even harmful treatments. Fixing the impairment is the final goal. There is no concern for the negative effects on disabled people, their autonomy, and agency.
WHY THE MEDICAL MODEL ISN’T INCLUSIVE OF SOCIAL CAUSES OF DISABILITY
It was non-disabled people who created the Medical Model of Disability. That is why how it views disability is based on an outside observer’s view of disability. Abled people recognize that a disabled person can’t do something. They recognize the person’s impairment and assume that it must be causing the problem. Abled people don’t have the necessary insight to understand that added outside barriers can also cause disability.
The Medical Model of Disability also reflects how society views disabled people. Society sees them as tragedies, burdens, or inspirations if they “overcome” their disability.
THE SOCIAL MODEL OF DISABILITY
The Social Model of Disability states that “Social barriers added to a person’s impairment cause their disability.”
People using the Social Model see disability as something society does to a person. They don’t see it as something a person inherently experiences due to their impairment. They see extra social barriers as the reason for why an impaired person becomes disabled. That’s why it’s the SOCIAL Model of Disability.
As a result, people using the Social Model of Disability aim to identify and take apart barriers in society. For this, they use social approaches like understanding and acceptance of disabled people, accommodations, and laws.
In short: The Social Model approach is trying to make the disabled person less disabled by changing the disabling factors in society.
PROBLEMS WITH THE SOCIAL MODEL OF DISABILITY
The Social Model of Disability states that a person’s impairment itself is not a disability. That disability is always caused by added social factors.
Disabled people who are only disabled by added social barriers exist. However, impairments that are in themselves disabilities exist too. Impairments that become disabling when adding natural environmental factors exist too.
When disabled people share how inherent impairments disable them, others may disagree. They may claim that it is not their impairment but added social barriers that disable them.
It’s important to help disabled people identify and take apart outside barriers. At the same time, we should allow others to address inherent barriers.
People using the Social Model often make generalized statements like “Nobody suffers from their impairment.”, “It’s not their impairment that disables people, it’s society!”, and “Disabled people don’t need or want a cure for their impairment!”.
It’s important to fight harmful people. We should also support disabled people who don’t experience being disabled negatively. At the same time, we should allow disabled people to address inherent problems.
People who use the Social Model may claim disabled people who discuss inherent disability suffer from internalized ableism. That they took on society’s negative views on disability, and now see themselves and their impairment the same way.
It’s important to identify and unlearn internalized ableism. At the same time, some disabled people are capable of objectively analyzing their experiences. They are capable of distinguishing between inherent and outside disabling factors. They can also spot any actual internalized ableism.
People using the Social Model may accuse disabled people who discuss inherent disability of “playing into the hands of” harmful people. Sometimes they even claim they harm their own community by “making disability look like something negative”.
It’s important to fight harmful people abusing our words. At the same time, we should support disabled people discussing inherent disability. We can and should point out when a disabled person draws false conclusions. We should try to educate and help them. At the same time, we should recognize and respect that being disabled does have negative effects on some disabled people.
WHY THE SOCIAL MODEL WASN’T CREATED INCLUSIVE OF INHERENT CAUSES OF DISABILITY
The Social Model of Disability started in the community of physically impaired people. In 1976 the Union of the Physically Impaired Against Segregation [UPIAS], a disability rights organization founded in 1972 in the United Kingdom, published a pamphlet titled “THE UNION OF THE PHYSICALLY IMPAIRED AGAINST SEGREGATION and THE DISABILITY ALLIANCE discuss Fundamental Principles of Disability”.
Within the pamphlet UPIAS defines disability as follows:
“In our view, it is society which disables physically impaired people. Disability is something imposed on top of our impairments, by the way we are unnecessarily isolated and excluded from full participation in society.”
UPIAS saw a clear difference between “impairment” and “disability”. This became the basis for the Social Model of Disability.
UPIAS stated that while other groups of disabled people have a lot of shared struggles with physically impaired people, there are also clear differences and their organization was specifically for physically impaired people.
In 1983 Mike Oliver (1945-2019) created the term “Social Model of Disability”. He stated that “The idea of the individual and the social model was taken quite simply and explicitly from the distinction originally made between impairment and disability by the Union of the Physically Impaired Against Segregation.” (Oliver, 1990)
The Social Model of Disability directly countered the Medical Model of Disability. First, disability rights activists correctly identified something the Medical Model was missing. They then used that as the basis for their new model of disability.
The Social Model of Disability was first created by and for physically impaired people. Specifically, those who felt they were not inherently disabled by their impairment, but instead by additional social barriers.
The Social Model was not created to be all-inclusive. It was created to specifically, actively counter the up to then prominent Medical Model. It purposefully stated that people with impairments aren’t inherently disabled – that they are actively being disabled by society.
This allowed disabled people to point out and demand the dismantlement of social barriers, instead of being subjected to medical interventions and being seen as being the cause for their problems. It also allowed them to connect and organize against the cause of their disabilities.
INTRODUCING THE HOLISTIC MODEL OF DISABILITY
WHY A NEW MODEL OF DISABILITY?
I thought about the existing models of disability extensively. Finally, I have come to understand that they all look at particular parts of disability. No model offers a complete picture for me.
Theoretically, this wouldn’t be a problem, if people used several models together. That way they could create a complete picture of disability. Practically though this doesn’t happen. Instead, people pick a model and operate from that model only. They often also deny any validity of other models or experiences of disability.
This leads to negative effects for disabled people who don’t fit neatly into a popular model. The more accepted a model of disability gets, the more unaccepted other models and experiences get, the more prominent these negative effects become.
I strongly felt that I needed an inclusive model of disability. That is why I decided to attempt to create one with the Holistic Model of Disability.
WHY “HOLISTIC” MODEL OF DISABILITY?
Just like the other models of disability, what it believes to be the cause of disability decides the name of the Holistic Model of Disability:
“Holistic” means to take into account every single part of the whole because every single part influences and shapes the whole. As a result, the Holistic Model of Disability takes into account all possible causes of disability.
The Holistic Model of Disability thus defines disability as follows:
Disability is any physical, neurological, mental, intellectual, or sensory impairment that by itself and/or in interaction with additional inherent and/or outside factors, may interfere with full, effective, and equal participation in any aspect of life and/or society. Disability can be temporary or permanent. It can be present in the womb, from birth, or acquired at any point later in life.
THE HOLISTIC MODEL OF DISABILITY’S GUIDING PRINCIPLES
The Holistic Model of Disability recognizes that every disabled person’s disability experience depends on their individual set of disabling circumstances. As a result, every aspect of a disabled person’s disabling set of circumstances informs what would and could improve their life.
Under the Holistic Model of Disability, “impairment” and “disability” are factual descriptors. They are terms free of value judgment. It is up to each disabled person to decide whether they see their impairment and/or disability as neutral, positive, or negative. Nobody can make such a value judgment for a disabled person.
The Holistic Model of Disability recognizes conflicting disability needs exist. That is to say, that what has a positive effect on one disabled person might have a negative effect on another.
The Holistic Model of Disability recognizes that the intersection of disability with other parts of a person’s identity can influence their disability experience [e.g. race, class, gender identity, sexual orientation, romantic orientation, age, religion, education].
“Nothing about us without us.” must be at the root of any and all disability-related matters.
QUACK AND HARMFUL TREATMENTS
The Holistic Model of Disability recognizes that impairment can cause inherent disability. It further recognizes that medical interventions can be necessary, and wanted by disabled people. However, it neither supports quack, nor harmful treatments.
EXAMPLES OF QUACK AND HARMFUL TREATMENTS:
– the use of GEDs (Graduated Electronic Decelerator) and similar electroshock tortures
– ABA (Applied Behavior Analysis), PBS (Positive Behavior Supports), and similar behavioral conditioning approaches
– MMS (Miracle Mineral Solution), the CD-protocol (Chlorine Dioxide), chelation, and similar bleach and chemical-based tortures
– fecal transplants for anything but C. difficile colitis
– restrictive diets for conditions that aren’t diet-related
– Hyperbaric Oxygen Therapy (HBOT), and other oxygen therapies for conditions unrelated to blood oxygen levels
– withholding access to communication methods like sign language, AAC, etc.
– withholding access to mobility aids
– chemical and physical restraint in not acutely life-threatening situations
– holding therapy
No treatment or intervention should take place without the informed consent of the disabled person.
The Holistic Model of Disability recognizes that systemic ableism exists. It aims to dismantle it.
EXAMPLES OF SYSTEMIC ABLEISM:
– sheltered workshops and sub-minimum wage
– violating disability rights laws
– seeing and treating disabled people as less than
– abled people speaking for and over disabled people
CAUSES FOR DISABILITY UNDER THE HOLISTIC MODEL OF DISABILITY
The Holistic Model of Disability recognizes that various factors may disable a person with an impairment.
A person’s impairment may cause disability. In this case, a person’s impairment is their disability.
One or more outside factors added to a person’s impairment may cause disability. In this case, a person’s disability is their impairment plus the added outside factor.
Disabling factors may interconnect and/or co-exist. One factor may affect another factor. Factors may co-exist in affecting a person’s disability but not each other.
Only inherent, only outside, or a combination of both factors may cause disability.
Disability causing factors and their disabling effects may be individual, varying, and fluctuating. The same, similar, or different factors may disabled people with the same impairment. What causes disability at one time may not cause disability at another time. The disabling effects a person experiences may change. The severity to which a person is disabled may change.
A disability may be present in the womb, from birth, or acquired at any point later in life. It may be temporary or permanent. Please note that most disability discourse relates to long term disability. Often people don’t specify this, likely due to practical reasons.
PRACTICAL APPLICATION OF THE HOLISTIC MODEL OF DISABILITY
The Holistic Model of Disability is a theoretical framework created for practical use. As such it serves two main purposes. Firstly, it’s a framework for recognizing, and understanding the factors that contribute to disability. Secondly, it’s a framework for minimizing disability by minimizing the disabling factors that influence it.
The Holistic Model of Disability recognizes general and individual approaches to minimizing disability. General approaches are put into place for and affect more than just an individual disabled person. Individual approaches are put into place for and affect an individual disabled person.
General approaches should attempt to cover as many different disability-related needs as possible. Ideally, this means providing more than one option. Ideally, general approaches also have the possibility of individualization built-in. This allows to adjust them as needed for individual disabled people.
AN EXAMPLE FOR PRACTICAL APPLICATION
Kell has migraines and light hypersensitivity. To minimize how disabled they are, Kell applies the Holistic Model of Disability.
INHERENTLY DISABLING FACTORS
– acute migraine attacks cause extreme headaches, nausea, vomiting, vision impairments, dizziness, speech impairments, and extreme light hypersensitivity
– acute migraine attacks disable Kell to the point of being bedbound for about 8 hours per attack
– Kells menstrual cycle and the resulting change in hormone levels triggers migraines
– light hypersensitivity can cause eye pain, headaches, and dizziness
– hormonal treatment to minimize hormone level fluctuations
– painkillers during acute migraine attacks
– prescription migraine drugs
– more research into migraines for better treatment
– a cure for migraines
ADDITIONAL OUTSIDE DISABLING FACTORS
– natural environments (sunlight, reflective surfaces like bodies of water)
– man-made environments (bright artificial lights, reflective surfaces like mirrors, glass, metal)
– social rules (people asking Kell to take off their sunglasses to make eye contact, or see and treat them as being rude)
– dress code and customer service policies at work (no sunglasses allowed in the dress code, the requirement to make eye contact with customers)
– Kells employer threatens to fire them if they don’t obey dress code and policies
INDIVIDUAL ENVIRONMENTAL MEASURES
– turning off, or dimming artificial lights
– closing blinds or curtains to block out sunlight
– wearing sunglasses
– minimizing ambient sound
GENERAL ENVIRONMENTAL MEASURES
– less bright lighting in public spaces
– less reflective surfaces in public spaces
– shaded spaces to avoid direct sunlight
INDIVIDUAL SOCIAL MEASURES
– people accepting their use of sunglasses
– employers accepting their use of sunglasses
GENERAL SOCIAL MEASURES
– a law to protect disabled people from being fired for being disabled
– a law to protect disabled people’s right to use accommodations as needed
– enforcement of these laws
– better education of society in disability matters
This is one example. Even though it’s long, it doesn’t fully cover Kell’s disability experience. Disability is complex. Because of this, we need to recognize, understand, and engage with it in all its aspects. Only then can disabled people live as well as possible.
PERSONAL FINAL THOUGHTS
I first publically talked about the concept of the Holistic Model of Disability in April 2018.
As a self-advocate, and later an autism activist, I needed a lens for disability that worked for my personal disability experience, my disability self-advocacy, and my activism. I realized early on that the Medical Model didn’t include all my experiences. For this reason, I adopted the Social Model instead. Later I realized that it didn’t include all my experiences of disability either.
I started working out my own understanding and definition of disability for myself. Then, I noticed other disabled people speaking up about the same issue. This led me to try to create a proper concept.
It took me almost two years since then to write this piece. This process has already helped me understand disability in its full context. I publish this in the hope that this model can do the same for others.
Disability issues are complex. Likewise, knowledge and understanding constantly change and evolve. Because of that, I currently see this write-up of the Holistic Model of Disability as a work in progress.
I hope the Holistic Model of Disability can be a tool to work towards understanding, support, accommodation, acceptance, inclusion, accessibility, autonomy, agency, rights, and justice for disabled people. That way disabled people have a chance to fully and equally take part in all aspects of life and society.
- CO-OCCURRING CONDITIONS
- PUBLIC STATEMENTS