Requiring accommodations for inclusion can be an invasive process. When the disability isn’t obvious, disbelief by others becomes another barrier to inclusion. Owning up and spelling out what you need is painful enough. So not being believed is the final straw. If you have a mental health condition this can be devastating. A personal story by a library employee highlights how attitudes are just as important as any physical workplace accommodations. The title of the article is, The Impact of Disbelief: On Being a Library Employee with a Disability. You will need institutional access for a free read or ask for a free copy from ResearchGate.
As a library employee with a hidden disability (post-traumatic stress disorder [PTSD]), just going through the accommodation process is difficult. The process is invasive and includes an in-depth interview with a disability specialist who knows nothing about you. The process also requires a letter from a care provider detailing both the accommodation and why it is necessary. In order to get an accommodation, the person must first be diagnosed by a medical professional or a psychiatrist, which is often expensive and time-consuming to obtain. The process is made more difficult and painful when supervisors and administrators do not recognize the validity of the condition for which the accommodation is needed. This paper explores the accommodation process, its impact on the employee, and the politics and psychology of disbelief and suspicion surrounding disability accommodation. Through the lens of personal experience and reflection, I will explore how the library, while a place of learning and advocacy for knowledge, can also be a place of ableist views that limit the abilities and potential of employees with disabilities. I will also provide guidelines for combating ableism in the library workplace.
Kat Holmes found the origin of include was to “shut in”. Similarly, the origin of exclude was to “shut out”. Maybe “inclusion” is not the right word for describing the inclusion of everyone in products, places and things. Holmes explains in the video below, that the topic of diversity is discussed in her workplace as gender, sexual orientation, religious belief, ethnicity, and race. Disability is usually mentioned last in the list, if at all. “But it is the one category that transcends all other categories”, she says. “Abilities are constantly changing”.
Holmes’ offers an alternative way for designers to consider diversity, and is based on her book, Mismatch: How Inclusion Shapes Design. An engaging talk for all upcoming designers in any field. And not just professional designers either. We all design things every day, so we all have a role to play.
Editor’s Note: I discussed this issue in a 2009 paper. Inclusion is problematic inasmuch as it requires those who are already included to invite into the group those who are excluded. Semantics can be important. What we need is inclusiveness – that’s where inclusion has already happened and there are no exclusions. Inclusion is a futuristic concept insofar as it is something for which we are striving, for if it were achieved, no discussion would be needed.
Acceptable language regarding people with disability has changed, and standards continue to adapt as understanding and perceptions evolve. Many terms once widely used are now considered to imply inferiority and serve to marginalise people. The National Center on Disability and Journalismhas updated their Style Guide which provides alternatives to terms still seen too oftenin the media.
The guide also gives an explanation for why some terms are considered offensive, derogatory, and/or marginalising. Unless the context of the story relates to the disability, it might not be necessary to point to any kind of impairment. And think about illustrations and photos too.
Here are a few common terms to avoid:
Afflicted with: Implies that a person with a disability is suffering or has a reduced quality of life.
Able-bodied: Refers to a person who does not have a disability. The term implies that all people with disabilities lack “able bodies” or the ability to use their bodies well. Use non-disabled. Use person without disability.
Confined to a wheelchair: Describes a person only in relationship to a piece of equipment designed to liberate rather than confine. Use wheelchair user.
Stricken with, suffers from, victim of: These terms carry the assumption that a person with a disability is suffering or has a reduced quality of life. Use living with…
Demented: Refer to someone as having dementia only if the information is relevant to the story and a formal diagnosis has been made. Use “a person with dementia” or “a person living with dementia.” Do not use senile.
Special needs: This can be problematic where there are government funded programs for “special schools”. The term is considered stigmatising – use “functional needs” or describe the specific issue or disability.
Inclusive illustrations: What’s in a face?
It’s often someone other than the writer of an article that chooses a picture to go with it. Usually this is a stock photo that might not convey the intended message. Stock photos of older people are often patronising. They show young and old hands, or a young person looking lovingly at an older person. Most illustrations are far from inclusive.
Similarly, stock photos of wheelchair users often use non-disabled models and not real wheelchair users. An article and guideline from an illustrator discusses how to add diversity to your brand whether an organisation, service or a product. The title of the article is, Your Face Here: Creating illustration guidelines for a more inclusive visual identity.
Whether being used to distill complex messages or add a touch of whimsy, illustration is one piece that makes up a company’s visual brand identity.”
Language etiquette around the topic of disability seems to get some people tongue-tied. Fear of offending often results in just that. But so does using outmoded terms such as “handicapped”. So what are the do’s and don’ts of terminology and language use?
People with Disability Australia (PWDA) have a great guide. It gives a context to the importance of language and how it relates to dignity and respect. It is based on the social model of disability. That is, disability is not an individual medical problem. Disablement is the result of an environment filled with physical and social barriers.
Should you say “People with disability” or “disabled person?” It depends on the individual. However, government policies use the person first version – people with disability. The one to avoid is “the disabled” because it dismisses people and puts this diverse group into one category. The same can be said for “the elderly”.
Adaptations of the word disability, or euphemisms, should not be used either. Terms such as differently-abled, special needs, or handicapable sound clever but are demeaning. Other terms such as “all abilities” suggests the opposite – a special place for people with disability. If it is inclusive it shouldn’t need a “special” title. However, accessible features can be included in any descriptions of the place or service.
The PWDA guide gives an overview of ableist language and its impact, some advice on reporting on disability, and a list of words and recommended alternatives.
Disability is not about inspiration
One other important aspect of reporting on disability is what the late Stella Young described as “inspriation porn” in an entertaining TED talk. The portrayal of a person doing everyday things, or achieving a goal, as being inspiring gets the no-go signal. People with disability are often portrayed in the media as being “sufferers” or “heroes”. Rarely is either the case.
Evastina Bjork from the Nordic School of Public Health discusses the concept of UD from the perspective of health and wellnessin this article. She traces the work done in Norway that precedes the landmark document, “Norway Universally Designed 2025” and how it relates to health benefits. Training courses in applying the concepts of UD for professionals were devised and continue to be revised and adapted to keep pace with new learning and updated evidence. Although an academic paper, the discussion about education and training, and application of UD in the health and wellness field is a refreshing perspective.
Language is more important than many people realise. As toddlers we start with nouns – naming things. Until we can name things, they cannot exist. For example, until we could say “policewoman” there could be no women in the police force. When it comes to language around disability naming is important. It is personal, which can mean there is no consensus. For example, in the UK the generic term is “disabled people”, in Australia it is “person with disability”. Each has their reason for their choice. Then there are particular disability groups that like to identify with a specific name, such as “I am autistic” or “we are autistic people”. Robin M Eames has written a thoughtful blog page on this topic and gives us plenty to think about. The bottom line is, check it out first and don’t assume about terms. As for Robin, she describes herselfas “a queercrip writer/artist/activist living on Gadigal land (Sydney, Australia).” There are lots of good reference links at the end of the article.
Champions of universal design are often told that to effect change you need a good economic argument. Several such arguments have been written, but have met with little success in terms of gaining greater acceptance of universal design and inclusive practice. Shops, buses, buildings, hotels, meeting places, schools, parks, tourist destinations, and homes still remain inaccessible to many. The tourism sector has recognised that telling hotels and holiday businesses that they are missing out on a significant market is not sufficient of itself to make change. What is needed is more “How to…”. The latest publication discussing economics, is on the purchasing power of working age people with disability. It travels over familiar ground with the latest statistics, facts and figures relative to the United States. It compares the disposable income of people with and without disability and with different disabilities, and goes on to discuss the data from a marketing perspective.
Service design is yet to get on board with universal design according to a Norwegian Masters thesis study by Oda Lintho Bue. Norway leads the way with its overarching policy and commitment in their policy document, Norway Universally Designed by 2025. So it is no surprise to see this study undertaken here. Universal design is not a profession in its own right, but many projects need a UD champion on the team. Committing resources on universal design early in the project will most likely ensure that there will be no need for resources used on redesign later. This point is well made in the thesis. Given that Norway has such a strong stance on UD, it is interesting to note that even Norway is struggling with getting implementation across the board.
The Missed Business booklet originally devised by the Australian Human Rights Commissionand Marrickville Council has been updated by the NSW Business Chamber. It gives key messages in simple sentences and information is presented on three pages with lots of graphics. The layout is designed for two page spread so font is small for online reading. Nevertheless it is good to see this publication appear again to help small business. There are links to additional documents. You can access the guide online or by downloading the PDF document directly. So, no more missed business!
Do any of your written or online registration forms ask for a gender specific title such as Ms or Mr? Or female, male? If so, you might want to think about being more gender inclusive. You might also want to consider whether this information is really necessary.
Sabrina Fonseca has written a very interesting article, Designing forms for gender diversity and inclusion. The focus is on designing surveys and marketing materials and whether the collection of gender information is really necessary, and if it is, how can you be inclusive?
Fonseca did some of her own research within trans and gender non-conforming (GNC) communities to come up with some good gender question recommendations. Giving people a really good reason for asking their gender is a start. If you can’t then probably you shouldn’t ask the question.
Fonseca includes an example of a complex form asking for a lot of statistical detail. This is the kind of form governments use. She says,
“Be transparent, explain what exactly you are asking about, and how it will benefit them. Reassure that your organization strives to be inclusive of everyone so they can feel welcome and protected while disclosing their information. As with any form field, if there isn’t a clear benefit to the user, you probably shouldn’t ask about it.”
A great comprehensive look at some of the issues trans and gender non-conforming people face when filling out forms and identity documents. This article was posted on the uxdesign.cc website.
When researching the topic of disability, how can researchers know if their methods are the right ones? Do all the standard academically accepted methods used in research projects suit this topic? Are they inclusive research methods?
Researchers with the lived experience of disability are few and far between, and then they are often schooled in the mainstream methods. So how can research methods be tested to show that they are doing the right job? Simple answer: involve people with disability from the start with the design of the research and again in the analysis. It’s one thing to do the job right (accepted methods), but it another to be doing the right job (the job that needs to be done).