Invisible Disability Stigma

If your reflex is to imagine a wheelchair user when you hear or read about people with disabilities, there are several poignant issues that can pass you by. There are plenty of disabilities not readily apparent to the onlooker, these are termed “invisible disabilities” or “hidden disabilities”. They include some chronic pain conditions and mental illnesses, to name just two broad categories. For some people, the visibility of their disability fluctuates with the severity of symptoms on any given day.

 

Not everyone with a disability, visible or invisible, is prevented from working. For those who are however, most developed countries provide a State benefit of some kind. A recent post discussed the design of these benefits.

 

People with invisible disabilities are often subjected to harsh judgement for not working. The reason they don’t work may not be common knowledge and some people may assume they are long-term unemployed by choice or doubt the validity of their disability because it’s not apparent to them as casual onlookers.

 

Amidst the criticism from relatives or acquaintances, there is also the dreaded question from strangers; “What do you do?” Anyone who has ever been unemployed for even the shortest length of time knows the discomfort this question can cause. For those with invisible disabilities, the choice is between deception, deflection or facing potential judgement as an indolent fraud.

 

Disability is not shameful, but social stigma is humiliating.

 

The decision to grant state disability benefit involves the consideration of their full medical file, communication with their own doctor and any consultants, in some cases an interview and/or a home visit (which may or may not be announced in advance).  After all of this, the benefit was granted. Yet, these people still face suspicion from people who have no access or right to that wealth of personal information.

 

There are systemic issues that unnecessarily expose people to these social difficulties. The following section provides some examples from just one sector of the public infrastructure, public transport. However, it’s important to note that people with invisible disabilities face well documented challenges and prejudicial preconceptions in many areas of life, including healthcare, education, employment, socialising and even parking. Parents of children with invisible disabilities also encounter negative attitudes and judgements.

 

It becomes clear that two problems exist. The root problem is this; people with invisible disabilities face prejudice and social stigma. The secondary problem is that many areas of public infrastructure are entirely insensitive to that experience.

 

Public Transport

Some governments provide free public travel passes to people with disabilities, visible and invisible, in order to supplement the State benefit or meet additional needs. Passengers with disabilities usually have to display these passes either when purchasing a ticket or in lieu of one.

For those with invisible disabilities, having to proclaim their disability status in public can expose them to prejudicial hostility and social exclusion or disapproval. So long as this remains the case, these passenger transactions should be made as smoothly as possible and restricted to the necessary personnel. Disability is not shameful, but social stigma is humiliating.

 

Readers can investigate the travel passes and tickets provided to persons with disabilities in their own territory and compare them to the suggested layout below.

I’ve witnessed the queue-halting scrutiny of a travel pass when the passenger has no visible disability. And I have heard drivers demand identification from persons they had assumed were not the rightful owners of such passes because their disability was not visible.

 

To verify the authenticity of a pass is part of their duty and rightfully so. However when it comes at the expense of a person’s privacy and results in public humiliation, I have to wonder if there’s not a better way?

 

In the ideal world, all free travel passes would superficially resemble common forms of travel card, being similar in shape and size, though clearly marked for drivers/conductors as a free travel card. In addition, a photograph should be included on the card, rather than requiring the passenger to produce separate photographic identification on demand. This also reduces the prevalence of travel card theft and subsequent fraud.

 

Furthermore, such travel cards should be compatible with electronic turnstiles and entry points, if any exist within the infrastructure. This removes the necessity for persons with disabilities, visible or invisible, to request assistance from staff. For those with invisible disabilities, requesting special assistance not only separates them out from others, often unnecessarily, but it also forces them to disclose their disability to any travelling companions. While invisible disabilities are still publicly regarded with such suspicion, that disclosure to people who are not in official positions, should be a choice.

 

Finally, tickets provided to persons with disabilities should superficially resemble other tickets. Some governments mark these tickets or colour them differently, to ensure that drivers or conductors are aware that this passenger may have additional needs. However, if the differences are so distinct, some passengers with disabilities will feel they have to hide their tickets, or even purchase standard tickets, just to maintain their privacy in the company of others or avoid judgment.

 

It becomes clear that two problems exist. The root problem is this; people with invisible disabilities face prejudice and social stigma. The secondary problem is that many areas of public infrastructure are entirely insensitive to that experience.

Related Resources:

Invisible Disabilities: “The challenges of identifying and disclosing disabilities that others can’t see” – Psychology Today.

Invisible Disability in the Workplace – Yonge Street Media.

Living with an Invisible Disability – [Video] One man with an invisible disability dispels myths and discusses his first-hand experiences prejudice and stigma.

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Deafness and Hearing Loss

Deafness, re-imagined in a cultural and social vacuum, would not be a disability. But deafness in a hearing world is disabling. Not all of that is directly related to the inability to hear.

A recent post briefly referenced the social model of disability. It used this neat summary:

“The social model of disability identifies systemic barriers, negative attitudes and exclusion by society (purposely or inadvertently) that mean society is the main contributory factor in disabling people.” –Wikipedia

Rachel Kolb’s TEDx talk never explicitly references the social model of disability. Nevertheless, some of the information Ms. Kolb provides, particularly the surprising statistics on outcomes for deaf children born to deaf parents compared with those born to hearing parents, can be seen as evidence of our society disabling people in unexpected and completely unnecessary ways.

 

I also want to suggest this video which provides excellent advice for hearing people on how to communicate with deaf people and those who are hard of hearing:

 

Learn More

If you have an interest in learning more about this topic, there are plenty of resources out there, it’s not just limited to video media. Youtubers however can offer some insight by uploading advice, examples of daily life and their personal experiences. Just bear in mind that no one person is representative of an entire community.

The playlist below provides a sample of those videos. It ranges from people delivering personal experiences and opinions, to explanations of assistive technology that people may use. And if you’re wondering what assistive technology means in a broader sense, here’s a video for that too.

 

Related Links:

Rachel Kolb on Lip Reading – Standford Magazine

Placing persons with disabilities at-risk of poverty

Absolute poverty refers to the inability to acquire vital means for survival, such as food, water, shelter and a minimum standard of sanitation. Relative poverty is an economic inequality calculated within the context of the society in which a person lives. It is usually given as a percentage of the average income for that society.

In the EU, a person whose income is below 60% of the median income (midpoint between lowest and highest) for their country of residence is said to be “at-risk-of poverty”. Whether or not they will experience (relative) poverty will depend on a number of factors such as the just how far below that 60% threshold they are, possession of assets, if any and of course, how long they’ve been at risk of poverty.

“Generally people who have been below an “at-risk-of poverty” line for several years are likely to be in a more extreme situation than those who are only in such a situation for a short time.”  – European Anti-Poverty Network

In addition, the EAPN highlight implications and aspects of poverty that go beyond a mere financial statement, such as indebtedness, inadequate housing and poor living conditions, ill-health, educational disadvantage and unemployment etc. Many of these things are enough to put someone into poverty, but they are also the effects of being there.

With all that in mind, let’s consider Ireland, a country with whose at-risk of poverty population is roughly in line with EU averages. To be at-risk of poverty in 2011, a single person’s annual income after tax would need to be lower than €10,889 (to see exactly what goes into this calculation see MoneyGuideIreland.com).

Like most developed countries, Ireland provides a disability payment to those whose disability prevents them from working. Following a means test, the maximum weekly amount for a single adult receiving Disability Allowance in Ireland is €188.00 giving an annual total of €9,776.00

This is the same amount provided to an unemployed single adult over the age of 26, in a means tested payment called Jobseeker’s Allowance. That payment is not intended to be sustainable in the long-term.

Low but financially viable payments to the temporarily unemployed are designed to provide incentive towards finding employment. While persons whose disability has been found to prevent them from working, have no means of improving their situation by finding employment, they must remain at-risk of poverty.

And at this point I must repeat myself, or rather, I reiterate the EAPN:

“Generally people who have been below an “at-risk-of poverty” line for several years are likely to be in a more extreme situation than those who are only in such a situation for a short time.”  – European Anti-Poverty Network

I want to add that Ireland is not alone in this, I am quite sure that this problem exists elsewhere in the world.

Public awareness of these situations is often quite low as people are not always willing to talk openly about their finances, some may not wish to discuss their disability in-depth and public attitudes to people on social benefits have not always been kind. In particular, people with invisible disabilities (something I will be posting about soon) face a lot of harsh criticism from outsiders who know very little about their disability.

Stella Young: Inspiration porn and the objectification of disability

Stella Young delivers a brief talk on the way that society objectifies people with disabilities – it might surprise you.

This talk, concise and humorous, adds some much needed realism to our perspective on disability.  The video focuses on physical disabilities that are readily visible to others; this visibility is essential to the production of what Ms. Young cleverly calls inspiration porn.

I hope to publish something very shortly regarding invisible disabilities. The social model of disability that Stella Young refers to in her talk will play a role in that future post and so I leave you with a succinct definition:

“The social model of disability identifies systemic barriers, negative attitudes and exclusion by society (purposely or inadvertently) that mean society is the main contributory factor in disabling people.”

 

UPDATE: Promised post entitled “Invisible Disability Stigma“.