Voices of people with autism in a book

Front cover of the text book.The autism research field has changed a lot in the last 20 years. One of the key findings is the impact the research process has on people with autism. So including the voices of people with autism is really important. With this in mind, a new version of a text book has sections written by autistic contributors from all walks of life. Neurodiversity is a relatively new concept and area of study. There is still much work to do in understanding the diversity of ways autistic people navigate the world around them. 

There is a separate link to the discussion on how the authors went about including people with the lived experience of autism. This link also gives a short chapter by chapter review of the book’s content.

The title of the book is, Autism: A new introduction to psychological theory and current debate. It’s by Sue Fletcher-Watson and Francesca Happe. 

If you want a more personal approach to autism, you can read a transcript of an interview with Louis Scarantino – an autism advocate.  

The Autism Research Council has published its research priorities for 2019.

A picture can paint the wrong words

Shutterstock image of a young person being pushed in a hospital wheelchair. The occupant is obviously a model that doesn't look like they have a disability.Time to bring photographers along with the universal design movement together with those who choose stock photos.  For those who understand the issues with the picture shown, there is no need to explain. But there are many others who see two good looking young people, one in a wheelchair being pushed by the other. They are wearing bright colours and looking happy as they make their way through an empty shopping mall. For the uninitiated there are three key issues with these companion pictures.

  • First, it perpetuates the stereotype that wheelchair users must be helped by being pushed rather than mobilising independently. A person walking alongside would be better. 
  • Second, it is clear that both of them can walk as they change places with each other to be pushed in the chair. There are many wheelchair-users who could be models and wouldn’t need to be pushed.
  • Third, the type of wheelchair is usually found in a hospital setting. It is not one that a person would normally own let alone use it to go shopping. Wheelchair-user models would come with their own wheelchair.

Wheelchair users are not the only way to convey diversity or disability. The majority of disabilities are invisible, e.g. low vision, hearing loss, heart disease. So pictures of groups of people from all walks of life are much better. Too many of these pictures show a lone wheelchair user in places devoid of other humans. This is not real life.

Images are used for a reason – to convey a message. Let’s make sure they convey the right messages.  

Diversity, Disability and Disbelief

A young man stands between library book shelves. He has a large book open in his hands.Requiring accommodations for inclusion can be an invasive process. When the disability isn’t obvious, disbelief by others becomes another barrier to inclusion. So just owning up and spelling out what you need is painful enough, but then not to be believed is the final straw. If you have a mental illness this can be devastating. A personal story by a library employee highlights how attitudes are just as important as any physical or workplace accommodations people might need. The title of the article is, The Impact of Disbelief: On Being a Library Employee with a Disability.

Abstract:  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.

There is a companion article Disability, the Silent D in Diversity, which gives the library experience of wanting to have diversity, but not wanting it to be too difficult.

What does inclusion actually mean?

Graphic of stick people in various poses with the caption, "Inclusiveness,, looking at everyoneKat 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.

Language Guide for Journalists and Others

Front cover of the style guide.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 Journalism has updated their Style Guide which provides alternatives to terms too often still seen in the written and electronic 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. 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.

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. 

UD and public health

Nordic School Pub HealthEvastina Bjork from the Nordic School of Public Health discusses the concept of UD from the perspective of health and wellness in 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.

UD principles for Australia’s aid program

DFAT UD guidelinesThe Department of Foreign Affairs and Trade stipulates that all overseas aid programs must follow the Principles of Universal Design. They have produced a comprehensive guide to all types of development projects including water, health, education and the built environment. It is useful to see how thinking universally about design can produce such a clear guide to inclusive practice and accessibility. This document was updated with a 2016 brochure with ten tips for promoting universal design in aid projects. There is also the companion document Development for All: 2015-2020 Strategy.  

Progress on UD in Norway: A review

Tall houses are reflected in the water.The houses are different colours, yellow, red and blueNorway’s planning policies have been underpinned by the principles of universal design since 2000. With a focus on policy, not design detail, this means everyone has to think about inclusion and accessibility in everything they do. Olav Rand Bringa, author of the early reports and papers on universal design in Norway, writes a review of progress with Einar Lund. In the introduction, they discuss the work and writings of British architect Selwyn Goldsmith that go back as far as 1963. In his last book in 2000, Goldsmith articulates his disappointment that little progress for access and inclusion has been made. The review asks the questions, What did we learn? and What did we Gain? In short, new buildings, outdoor environments, websites and more are all designed according to universal design. However, there is much to do with the existing environment. The paper Picture of the front cover of the Norwegian Action Planconcludes with, “And Universal Design, will it remain a particular design-concept in the future or will it simply be what everyone associates with good design? We should have good reasons to expect the latter.”  Also of interest is the Nordic Charter for Universal Design initiated in 2011, and the main policy document, Norway Universally Designed 2025 that was updated in 2016.

Abstract: The national policy in Norway have since the last part of the 1990s been organized in programs that erected actions including national authorities, municipalities, regional authorities and private enterprises. What have we gained by our national activities to mainstream inclusive and accessibility policy for persons with reduced capability through the principles of Universal Design? Have we made society accessible to everyone and prevented discrimination. Are the results visible? We can measure results on several sectors, inter alia public buildings, outdoor areas, central communication hubs, public transport and the occurrence plans for Universal Design in municipalities and regions. Through several programs and action plans the Norwegian government has developed a sectoral approach for including persons with disabilities in the society. The majority of ministries have participated in these plans. Local initiatives, local councils for disabled people, and later on municipalities and county administrations were supported by national authorities as complements to regulations and laws. In addition, guidelines and assisting funds were used. The main objective was to redefine the national policy, using better defined national goals and introducing Universal Design to replace accessibility as the basic tool. The mainstreaming of the accessibility policy, where Universal Design was included in relevant sectors and activities, was a crucial part of the strategy. The national policy was organized in programs that erected actions focusing on how to reach, inspire and include municipalities and regional authorities in their own struggle for Universal Design. Through the mainstream approach ministries have both earmarked economic transfers to their own agencies and used steering documents guide to these agencies how to implement Universal Design in their advisory services, in practicing laws and regulations and in their own planning and building activities.

The full title of the paper is, From Visions to Practical Policy: The Universal Design Journey in Norway. What Did We Learn? What Did We Gain? What
Now? 

How shall I say that?

A blackboard with words: learn, language, adjectives, nouns, verbs, adverbs written in chalkLanguage 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 herself as “a queercrip writer/artist/activist living on Gadigal land (Sydney, Australia).” There are lots of good reference links at the end of the article. 

Climate Change includes everyone

View of a cyclone forming taken from space.In her introduction to Disability Inclusion in Climate Change: Impacts and Intersections, Marsha Saxton begins, “Mention “climate change and disability” and most people are immediately puzzled— it’s an issue that has often never occurred to them…” This is an article about the right to be rescued. Saxton argues that while people are now aware of this group, they are somewhat at a loss about what to do. Disaster guidelines and related literature talks of “people with access and functional needs” and “individuals requiring additional assistance”, but this terminology has not entered the climate change literature. This is quite a long article, but comprehensive, including responsibilities under the UN Conventions for Climate Change and for Persons with Disability. The article concludes, “Responses will require large-scale initiatives, focused actions and strong collaborations between stakeholders across the climate and disability spectrum. It is fortunate that those currently addressing climate change and disability, respectively, are well-engaged with a social justice framework. Both groups must understand the scope and complexities between climate change and disability. The key is thus to educate and activate these stakeholders to develop strategies to safeguard people with disabilities as climate change unfolds.”