Achieving Health for All: Reflections on World Health Day

April 7th is World Health Day. Each year, the WHO chooses a different health theme to focus on, and this celebration serves as an important reminder of the need to prioritize health and wellbeing as a fundamental human right and to work together to create a healthier and more equitable world for all. 

The theme for World Health Day 2023 is "Health for All", which is a call to action for governments, health organizations, and individuals around the world to work together to ensure that everyone, everywhere, has access to quality healthcare services. 

We asked Chat GPT what's intended by “Health for All” and if that could mean that people with disabilities and chronic illnesses should be treated fairly and without bias. This was the answer: “Everyone, regardless of their health status, deserves access to quality healthcare services and should be treated with respect, dignity, and compassion.” Pretty basic, right? We asked Chat GPT to go further: “Unfortunately, people with disabilities and chronic illnesses often face discrimination and barriers to accessing healthcare services. This can be due to a lack of understanding about their condition, societal stigmas, and physical or structural barriers in healthcare facilities.” 

Well, we know that Chat GPT is a language model software, so we asked how this answer was obtained: “When you ask me a question, I use my algorithms to analyze the meaning of the question, and then I search through my database to find the most relevant information to provide you with an accurate answer.” If it is widely known that Bias and discrimination exist in health care regarding people with disabilities and chronic illnesses, why are health services treating this as a non-issue? 

The field of medicine has historically been regarded as a compassionate profession that places equal value on every human life, free from prejudice or discrimination. However, medical providers are still humans and not immune to society's bias regarding individuals commonly seen as “others”. Disability is often seen as a vehicle of vulnerability and low function (and, therefore, low competence), which brings a sense of pity. [i] 

In recent years, there has been an increased awareness and decreased acceptability of different forms of discrimination and their intersections (such as age, sex, religion, ethnicity, etc). However, persons with disabilities (PwD) continue to suffer with ableist attitudes and a lack of accommodation in general and, specifically, in the health care system. 

Let’s start connecting names with their definitions. What is the definition of a Person with a disability? According to the WHO, PwD “are those who have ‘long-term physical, mental, intellectual, or sensory impairments, which in interaction with various barriers may hinder their full and effective participation in society on an equal basis with others”. [ii] And what do PwD and ableism have in common? Ableism is a “network of beliefs, processes, and practices that produces a particular kind of self and body (the corporeal standard) that is projected as the perfect, species-typical, and therefore essential and fully human. Disability then, is cast as a diminished state of being human.”[iii] Although Ableism is a sociological and legal concept, medicine always set the standards not only for the treatment of what they call disabled bodies, but also for how society in general thinks about disability.  

Heidi L. Janz illustrates this scenario through the concept of quality of life. Quality of life is measured through function indicators, which means that people who have difficulties with everyday life tasks and need support from third parties are considered to have a lower quality of life. The prejudice of these measures stands with the fact that “quality of life” is used as an indicator of the appropriateness or inappropriateness of a medical course of treatment for a person with disabilities. Terri Beth Miller[iv]address this problem through a first-person testimonial: “The determination of which lives are “worth living” and which aren’t is too closely tied to statistical averages for a “meaningful” recovery based on population studies. The individual, in other words, has become a data point on a sliding scale that neither the patient nor the family has created”. Miller, assessing their mother’s illness and disability and pressured by medical staff to decrease life support treatments, explained: “My mother was adamant that the only person capable of assessing whether a life was worth living was the person who was living it. She was also firm in her insistence that we cannot truly understand or anticipate how we would experience and value life with a severe disability unless it happened to us.” 

Overall, when we compare the results of a disabled person with a non-disabled person, we will conclude that they differ in quality of life when, in reality, they differ in function. This means that treatment options for people with disabilities turn out to be limited or nonexistent.

What makes this so dangerous, along with ableism, is that this is considered common sense, and, as Campbell states, things that are considered routine parts of daily living within the disability community, such as the use of feeding tubes and respirators, suddenly become indicators of an unacceptably low quality of life.

These situations came into discussion with the COVID-19 pandemic when healthcare institutions started to sort out what types of patients should have life-support treatment or not. About this, Chicoine et al[v], brought up a good discussion point: “We must ask ourselves: would we make this same recommendation for a comparable person without IDD? If not, what difference does the IDD make? What are the data that the patient is less likely to benefit from treatment?”. In this case, the authors are talking about Intellectual and Developmental Disabilities (IDD), which are often invisible and diminished by healthcare and society in general. In a similar position, we have chronic illnesses that lead to disability. About this, Emma Cieslick stated in a first-person testimonial: “Up until this past year, I believed that my chronic illness was valid because of the medical objects and medical attention that I received. This was a defense mechanism rooted in a structurally ableist society, and one that sought to devalue my experience as a disabled person on the basis that medical devices are necessary to prove suffering and the need for medical help and treatment." [vi] 

Here we can see a double discrimination: we are “too disabled” to “deserve” life-supporting and complex medical treatment, or we don’t have “enough disability” and need to accept our chronic illness or intellectual disability as a way of living without proper treatment. Well, I’m saying “we” because I can talk through a first-person lens too. When I tried to get a diagnosis to explain my chronic pain and continuous articular inflammation, I heard this from a “top-notch” rheumatologist: “You need to get worse so we can intervene, you are too young” (ageism and ableism, really?). I needed 4 years and 6 doctors to get diagnosed with rheumatoid arthritis. At the same time, I started to get diagnosed with AuADHD. One day I sat down with my GP at the time and informed him about these diagnostics, and he said: “Never say anything about your chronic illness if you need to go to the ER. They will just assume you are having a crisis related to your problems and will dismiss you with painkillers and anxiolytics”. 

PwD should never feel the need to hide their disabilities for fear of being gaslighted.

What can we do to overcome this unconscious (so conscious, sometimes) Bias? Kaundinya and Schroth[vii], disability advocates, explained: “Within medical training, related changes should rebuild a stronger, more inclusive foundation where what is “normal” is learning about how to combat ableism to provide equitable care to all. Persons with disabilities could serve as educators of their own lived experience, debunking unrelenting quality of life myths”.  

The lesson is clear: if we want Health for All, we need to include PwD in decision-making and strategy-defining for health care services.
Nothing about us, without us.  

 
References 

[i] Janz HL. Ableism: the undiagnosed malady afflicting medicine. CMAJ. 2019 Apr 29;191(17):E478-E479. doi: 10.1503/cmaj.180903. PMID: 31036612; PMCID: PMC6488478. 

[ii] Geneva: World Health Organization; 2021. Licence: CC BY-NC-SA 3.0 IGO. 

[iii] Campbell FK. Inciting legal fictions: disability’s date with ontology and the ableist body of the law. Griffith Law Rev 2001;10:42-62. 

[iv] Miller, Terri Beth. A Life Worth Living: An Elegy For My Mother. Rooted in Rights. Thursday, November 3, 2022 

[v] Chicoine C, Hickey EE, Kirschner KL, Chicoine BA. Ableism at the Bedside: People with Intellectual Disabilities and COVID-19. J Am Board Fam Med. 2022 Mar-Apr;35(2):390-393. doi: 10.3122/jabfm.2022.02.210371. PMID: 35379726. 

[vi] Cieslick, Emma. What’s In A Pair of Socks?. Rooted in Rights. Thursday, January 19, 2023 

[vii] Kaundinya T, Schroth S. Dismantle Ableism, Accept Disability: Making the Case for Anti-Ableism in Medical Education. J Med Educ Curric Dev. 2022 Feb 2;9:23821205221076660. doi: 10.1177/23821205221076660. PMID: 35128061; PMCID: PMC8814984.