Philanthropy is yet another barrier to overcome in the quest for inclusion. As a service, it too, should be universally designed. The underpinning principle of universal design is inclusion. It’s captured in the Sustainable Development Goals with the phrase, “leave no-one behind”. So let’s take a closer look at philanthropy and what that means.
Employment of people with disability and other marginalized groups in the philanthropy sector is one issue. Including people with disability within all grants is another. However, the disability sector is most often treated as a stand-alone area for receiving grants. This segregation is not helpful – disability should be included within all projects. The Disability Philanthropy website has three videos that explain more and a resource library.
Ryan Easterly explains, “Philanthropy needs to do a better job reflecting society and communities in general.” Funders should consider disability and the how it affects all aspects of life. There is hardly any issue that a foundation would fund that doesn’t impact or include disability.
Policy is often seen as the way to make change. But when it comes to being inclusive it hasn’t worked very well. If policies, codes and papers are not accessible to all stakeholders, how can we create inclusion? Janice Rieger makes this point in her paper which will be the subject of her workshop at the UD Conference in Melbourne in May. She says videos make change more effectively than policy.
The title of her short paper and workshop is, Reframing Universal Design: Creating Short Videos for Inclusion. Her research provides insights on how videos travel and reach different audiences. This results in a significant impact and enacted change and informed policy. Dr Rieger concludes that “video impacts more than policies, codes and papers ever can”.
Editor’s comment: I think this will be one of the highlights of the program. Janice works internationally and we are very pleased to have her contribution to the program.
Here is an extract from her paper:
“Video is a visceral medium, offering the opportunity to reframe universal design practice and education. It captures movements and can be co-created with people with disabilities. Videos co-created for inclusion encourage detailed and rich embodied knowledge and experiences because information is prompted by association with one’s surroundings. Significantly, videos have the capacity to excavate personalized knowledge of those with different abilities and uncover systems of exclusion that are often hidden or naturalized, and shamedly rendered invisible through policies, codes and papers.”
In a short video titled, Wandering on the Braille Trail, Sarah Boulton explains how she navigates the environment using her white can and tactile ground markers.
How do you include people in decisions that will affect them when it’s not easy for them to participate? It’s a chicken and egg situation. So, asking people with disability to contribute takes more than a survey or a community meeting. It needs a much more thoughtful process. Janice Rieger has some thoughts on the right to participate and co-design polices and processes.
Public sector co-designing is an emerging field of practice. It provides the opportunity for creativity and innovative ideas. Reframing participatory engagement through a social justice lens takes us towards a co-designing process.
“We are entering a new era in Australia as we envision a new disability strategy to replace the current national disability strategy (2010–2020). During this transition, we can reflect on and recognise the changing disability landscape in Australia and ensure that we create a just and inclusive Australian society. Recent consultations and reports have called for people with a disability to directly engage in designing the new disability strategy in Australia, but what does that entail, and how will the rights of people with disabilities be upheld throughout this process? This brief describes public sector co-designing practice—an emerging practice aiming to open up new trajectories for policy development through a co-design process and to provide best practice recommendations for the next disability strategy in Australia.”
Sustainable Development Goals (SDG) are a blueprint to achieve a more sustainable future for all. The SDG are interconnected and the aim is to “leave no one behind”. Universal design is now a key element of the SDG as a means of including people with disability. UN member states are required to report on disability and inclusion within their actions on the SDG. They will need to show measurable actions not just policies.
Sweden’s Ministry of Participation virtual event titled, The principle of universal design as a tool for leaving no-one behind provides a good background in how universal design links with the SDG. The video is an hour. At the five minute mark a UN rep explains the UN position. The second speaker listed was not able to join and the moderator spoke about disability and inclusion being at the heart of the SDG. At the 22-23 minute mark there is an interesting presentation on the convergence of UD and the SDG. Data graphics clearly explain why universal design is needed. The final speaker has a short session on a city project which is at the 51 minute mark.
Tip: The video is captioned so you can select a faster speed in the settings to read and hear. You will note that the closed captioning covers some other subtitling. This was the automatic live captioning that is a Zoom option. The closed captioning added later “tidies up” the auto captions and uses a larger font.
A Roy Morgan report gives us a good idea of what younger people think of aged care and what they expect for themselves. In a survey covering people aged 18-70+ years, they found that younger people think that going to aged care is acceptable. However, the closer the survey participants are to older age, the more likely they will want to stay home. This was emphasised in a program on ABC TV about a small rural community in Queensland.
The ABC program featured a 91 year-old farmer whose wife went to their nearest aged care facility 50 km away. He said, “I’ll feel guilty ’til the day I die that she had to go off.” The story featured the grief of the farmer and others who were separated from their friends and relatives. The farmer said he was “grafted onto the place”, but that it was inevitable he would need to go to a facility.
The ABC story was about a campaign to build a care facility in the small town. There was no mention of aged care at home. There was also no mention of home modifications or other options. Another solution is to have 6-10 universally designed villa-style units as a cluster where home help could be provided. A better solution is to have all new homes universally designed and start building housing stock suited to our futures.
There will always be a place for aged care facilities, but they are expensive to build and to run and are highly regulated. The Roy Morgan survey found that those who had visited an aged care facility felt residents had no control over their lives, were lonely and not happy. Nevertheless they believed residents were safe and comfortable.
Hardly anyone had an idea how much the government contributes to aged care costs. Most thought it about half, but it is 78 per cent. This is something to consider. If people stay home longer, even with home care, the costs of running a facility are avoided.
Bottom line? As people get closer to 70 and 80 years they want to stay home and be cared for at home with a mix of family and paid care. Younger people prioritised medical services whereas older people emphasised the need for help with everyday household tasks. This supports their wish to stay put. The different perspectives indicate that what younger people perceive about aged care and ageing is different from reality.
The Roy Morgan report was commissioned by the Royal Commission into Aged Care Quality and Safety and is titled, What Australians Think of Ageing and Aged Care.
The ABC program is titled, Queensland country town pushes for regional aged care homes so the elderly aren’t forces to move to cities. It was broadcast on 19 July 2020 in the Landline program. It is available on iView.
The American Sociological Association has developed a comprehensive policy to ensure the highest level of inclusion for all members. They have 15 recommendations that could be a model for others to follow.
ASA has on ongoing commitment to using universal design principles to make ASA events truly welcoming to all members.
The Status Committee’s 15 recommendations are:
Continue to support the Committee on the Status of Persons with Disabilities.
Continue to collect disability related data during membership renewal process.
Fully institute a system for recording disability concerns and their resolution.
Provide accessible electronic copies of the Annual Meeting program upon request as a standard accessibility feature.
Establish as standard ASA policy and practice the distribution of a letter regarding disability services to members who check the box requesting information during their membership renewal.
As part of standard meeting policy, the hotel should complete an accessibility checklist, preferably before contracting or at least a year before the meeting, to enable the identification of accessibility problems. Based on this checklist, ASA staff can identify potential problems and negotiate their resolution. Completed checklists should be recorded and saved, and made available to the committee to the extent appropriate, along with reports on changes made to properties in response to them.
As part of standard meeting policy, the ASA should conduct an on-site inspection following receipt of the checklist.
Provide an orientation/walk-through of the Annual Meeting site upon request as a standard accessibility service (to be conducted by members of the Committee or members of the Section on Disabilities).
Provide a gender-neutral restroom as a standard accessibility service.
Provide captioning for all plenary sessions as standard practice (not simply upon request).
Insert accessibility features/concerns onto the Annual Meeting program maps.
Materials related to the Annual Meeting site more broadly should offer relevant accessibility information (e.g., the restaurant guide, tour descriptions, and location transportation information).
A brief mention of disability services and how to file a concern/complaint should be in the Annual Meeting program, on the website, and emailed to any member who has requested information on these services when they renewed their membership.
As a matter of policy, include a link to the 2008 Footnotes articles on universal design and accessible presentations in acceptance notices for Annual Meeting presentations.
Provide continued support needed to gain a “Double-A Conformance to Web Content Accessibility” sticker for the ASA web site, awarded by the Website Accessibility Initiative (WAI).
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 separatelink 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.
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.
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.