In the early 2000s, the World Health Organization released their International Classification of Functioning, Disability, and Health (ICF) framework. This model defines disability as the interaction between structural and functional differences in human development and a range of social and environmental factors.
Using this framework, disability can arise in three separate ways:
Impairment in the structure or function of brain and body
Limitation in one’s engagement in daily activities
Restriction in participation in the home, work, or community environments
The examples below show how various impairments can lead to a cascading effect of limitations and restrictions on an individual’s daily lived experiences.
Impairment | Activity Limitation | Participation Restriction |
Limb Difference | Difficulties with typing on a computer, opening doors | Difficulties with participating at school, work, leisure activities |
Low vision | Difficulties with navigating environments independently, accessing materials, learning from visual content | Difficulties with participating in or access to school, work, leisure activities |
Neurochemical differences that lead to depression | Difficulties with sleep, regulation of mood, energy levels | Difficulties with maintaining employment, accessing appropriate care, maintaining relationships |
Brain differences as a result of prenatal alcohol exposure | Difficulties with completing activities, sleep, mood regulation, social relationships | Difficulties with school expulsion, loss of work, lack of friendships, access to community activities |
Historically, individuals with disabilities have faced a raft of ineffective or even harmful interventions to address their needs. By the second half of the 20th century, individuals with disabilities began to experience greater inclusion in mainstream society. However, inclusion was largely predicated on the notion that individuals with disabilities carry the burden of change through the medical model of disability.
The medical model suggests that individuals with impairments have differences in brain or body structure or function that leaves them largely atypical or “broken”, much like one would view having a cold or a broken arm. The “fix” to developmental differences is to treat impairments as problems that could be lessened or cured through therapy. Eventually, significant hours of skill-building interventions became the gold standard of care for individuals with neurodevelopmental disorders like autism or FASD. If they were able to lessen their impairments to fit society’s standards and expectations, then full inclusion could be ultimately achieved.
Is the Medical Model Sufficient to Address Disability?
As the medical model became the default model of care, disability activists warned that the burden of change was largely being placed on individuals with disabilities through impairment reduction. Despite environmental improvements being made through laws like the Americans with Disabilities Act, most systems of care were designed to support a push toward neurotypicality. This high level of focus on behavioral intervention was even codified into special education law (nearly the entire individualized education plan or IEP is on goal setting for the child or young adult) and into insurance billing practices (billable codes for coaching, consultation, or collaborative models of care are rare).
If the living experiences of people with disabilities are expected to get better, it is the work of the child or adult with disability (and by proxy their family members) to make that happen. Goals are set to reduce impairment and improve the limitations on participation and restrictions in activities. If these goals aren’t fully realized, then poor outcomes fall squarely on the individual with disabilities and their family (“they didn’t try hard enough”). Never do we consider that the model itself might actually be broken.
For an example of this phenomenon and its impacts, consider someone who has a fluency disorder.
Stuttering is a fairly overt symptom of fluency differences that is often very concerning to family members. Parents become worried about the degree of disability the child experiences in the home, school, or community.
The parents reach out to a speech-language pathologist (SLP) for help. The SLP evaluates the child and listens to concerns about the child’s limitation in activities and restriction from experiences. A fluency disorder is diagnosed and a course of therapy created to reduce stuttering behaviors. The expectation is that limitations on activities and participation restrictions will lessen over time by developing more fluent speech.
What’s interesting is that two thirds of fluency disorders spontaneously remit (i.e., get better) on their own. For teens and adults who have persistent stuttering, a focus on impairment reduction does little to change the ongoing limitations on or restrictions to their everyday experiences. They work hard to improve their speech to community expectations, bearing nearly all of the burden of change to “fit” into society. This model of care has a high likelihood of increasing the individual’s level of stress and anxiety. This can worsen their speech production, heavily impact activities, and create participation barriers in everyday life such as speaking in a group setting, ordering food, or even talking with friends.
This was the exact experience of my dear friend, Henry, who ultimately committed suicide because of his experiences as someone who stuttered. He did all of the therapies. He went to all of the support groups. He tried hard to be accepted in society, but one morning, he called his mother and said, “Mom, I think I’m done.” Henry didn’t have the luxury to take a vacation from his disability and the expectations to change and fit in were too much.
Society placed all of the burden on Henry to change in every context he entered. He felt he had experienced enough, despite being one of the kindest, most talented people I’ve ever met.
What is the answer to these issues baked into our systems of care? Can society move beyond simply seeking neurotypicality through impairment reduction? Instead of remaining in this system, let’s change the current model of care to promote a more supportive and inclusive future.
Emily Rusnak, Ph.D.
Founder and Executive Director of FASD Collaborative Project
Learn More: