Develop a disability or chronic illness, and new labels will be attached to your identity. While some can open the doors to treatment and support, others can trap us in a box built of other people’s assumptions. How do we make sure the labels of disability work for the people they attach to?
We all need to see the person, not the label, but that doesn't mean labels shouldn't be used. They can empower those who wield them. The crucial thing is that this power is placed in the hands of the person concerned.
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Disability comes with a range of labels. At the most basic there is the notion of disability or chronic illness itself. An enormous umbrella term, it serves to group all those who have some sort of long-term physical or mental condition that impacts on daily life. On the one hand, that grouping provides access to support and adaptations. On the other, it is a crude way of lumping people with an immense and diverse range of conditions and separating us from the “normal.”
On the next level are the diagnostic labels. Multiple sclerosis. Amputee. Bipolar disorder. Officially neutral, these terms are often essential to allowing a patient to access treatment or support services. However, what should be an impartial medical term can be laden with value judgments, both inside and outside the medical world. Stigmas still attach to many conditions such as mental illnesses and HIV, while even non-stigmatised conditions can generate assumptions about capability and acceptable behavior.
Then there are the unofficial labels, often relentlessly negative when imposed from the outside. Scrounger. Cripple. Weirdo. Invalid.
The power of labels
Ownership or use of a label does not have to be negative. For someone who has lived with debilitating symptoms of unknown cause, diagnosis can bring great relief, and be the key to the magical realm of treatment and support.
Living with an undiagnosed condition is hard – what do you tell people when they ask what’s wrong? What goes on a medical certificate? Will support services – social, financial or educational – engage with a list of symptoms with no name? When living with an undiagnosed condition, there is always potential for anxiety – will people take me seriously if there is no official name for what is wrong? To be able to say “I have Ehlers-Danlos syndrome” or “I have clinically diagnosed PTSD” is a form of power. It may place us in a box, but it also fits us into a clear and understood framework that the system can deal with.
Furthermore, for some people, a label is a key piece of identity, something that empowers and recognizes who we are and the reality of our lives. This is prominently seen in the commitment to identity-first language in some communities. In general, society has moved towards person-first language (e.g., a person with a disability, rather than a disabled person) as a way of emphasizing the individual, not the condition. However, many disabled people, particularly in the autism, blind and deaf communities, have reclaimed identity-first language to express that we are different, not broken. Whereas person-first language frames the condition as something we have or suffer from, identity-first language can reclaim the label as a fundamental part of who we are.
The stigma of labels
The potential of labels to empower is unfortunately balanced by the potential to stigmatize. Much of this arises from stereotypes and public ignorance around conditions – for example, the idea that people with schizophrenia are risks to public safety, when in reality this risk is very low, and they are actually at higher risk of being the victims of violence. Similar types of stigma can be found around public perceptions of other mental health conditions, HIV, and in general around the capacity of disabled people to live equal and fulfilling lives.
Unfortunately, stigma or false assumptions arising from labels are not left at the hospital threshold. The very same diagnostic label that should open the doors to treatment and support can become a burden if it obscures the patient. Mental health labels are particularly known for this, sometimes being used to call into question a patient’s veracity, or even the validity of providing treatment. This can range from patients having physical symptoms dismissed as “attention-seeking” through to failure to treat physical ailments in patients with severe mental health conditions.
Assumptions based on identity go beyond diagnostics. A classic example is disparities in treatment and diagnosis based on biological sex. Both autism and heart disease are historically underdiagnosed in women, not because women do not develop the conditions, but because of medical and social assumptions about the sex profile of patients. It is not just in stereotypically male conditions that women can lose out. Even with conditions such as endometriosis, underdiagnosis and delayed diagnosis can stem from assumptions about women’s relationships with pain and their menstrual cycle. In all these cases, the label “female” obstructs an objective evaluation of the symptoms.
Labels – a question of choice
The issue of how to resolve the negative issues around labeling while retaining the advantages is complex but important. Research has shown that the stigma associated with diagnostic labels such as schizophrenia decreases the likelihood that people will seek treatment, while social perceptions of labels affect everything from disabled people’s chances of employment, to being able to walk the streets without fear of abuse.
At a medical level, diagnostic labels are clearly unavoidable and often helpful, but as in the discussion around person first vs. identity first language, they should be applied in consultation with the person concerned, not applied to them. Within the medical system, it is essential that labels, whether they derive from a person’s sex, skin color, or other medical conditions, are never allowed to obscure the biologically and psychologically complex human behind them.
Socially, it is time for uncomfortable conversations. We can all play a role in ensuring that negative connotations are reduced, whether that is calling out abuse, stereotypes or discrimination when they rear their ugly heads, or confronting our own ideas. If a colleague told you they had schizophrenia or chronic fatigue syndrome, would that change your perception of them? If asked to use person-first or identity-first language by a disabled person, would you respect that, or explain why their choice doesn’t meet your ideas?
We all need to see the person, not the label, but that doesn’t mean labels shouldn’t be used. They can empower those who wield them. The crucial thing is that this power is placed in the hands of the person concerned. For the rest of us, whether we are ourselves able-bodied or disabled, a friend or a doctor, our assumptions about a condition are best left at the door.