Engaging people with intellectual disability in research

People with intellectual disability continue to be excluded from research practices. This is often due to social and economic factors such as limited education opportunities and access to services. Exclusion is easily perpetuated when you add systemic bias to the list.

Ethics approval processes often view people with intellectual disability as “vulnerable”. This makes their inclusion more difficult for researchers.

Four people are seated at a table but their faces are obscured. One is writing on a notepad. A coffee mug and laptop are on the table. Including people with intellectual disability.

The design of research methods systemically excludes people with disability and other marginalised groups. Consequently, their voices are unheard in health, employment, education and independent living research.

According to an article from the US, approximately 75% of clinical trials have directly or indirectly excluded adults with intellectual disabilities. Just over 33% of the studies have excluded people based on cognitive impairment or diagnosis of intellectual disability.

New methods needed

In response to the ethics and research design challenges, researchers are finding new ways to adapt their methods. The article discusses three approaches:

1. Adapting research materials and processes into individualised and accessible formats.

2. Adopting inclusive research participation methods.

3. Community participation and co-researcher engagement.

Although inclusion strategies are making progress, researchers are lacking helpful guidance. Consequently, including people with intellectual disability in research in a meaningful way requires more work.

The title of the paper is, Inclusive Methods for Engaging People With Intellectual and Developmental Disabilities in Research Practices. This is a short paper and easy to read.

Technology and wellbeing

A related article on co-designing with people with intellectual disabilities looks at developing technologies. Here is an excerpt from the abstract:

Involving people with intellectual disabilities on issues relating to their mental wellbeing is essential for developing relevant tools. This research explores the use of inclusive and participatory co-design techniques and principles.

Individuals with intellectual disabilities participated in a co-design process via a series of
workshops and focus groups. The workshops helped participants explore new technologies, including sensors and feedback mechanisms that can help monitor and potentially improve mental wellbeing. The co-design approach developed various interfaces suited to varying ages.

The title of the article is, In the hands of users with Intellectual Disabilities: Co-Designing Tangible User Interfaces for Mental Wellbeing.

People with intellectual disability and support workers

Abuse of people with intellectual disability focuses on extreme forms of violence at the expense of everyday indignities. Humiliation, degradation, and hurt have a negative effect on identity and makes it more difficult to recruit research participants.

An article by a group of Australian researchers recommends taking action to support both workers and people with disability for improved wellbeing. Here are the key points from their article:

  • Everyday harms are the little things that upset people, such as making unkind jokes about you, being ignored, or disrespected, are not treated as abuse
  • In our project, we called this misrecognition.
  • We looked at when misrecognition happened between young people with disability and their paid support workers.
  • Much of the time, people did not intend to cause harm, but the other person was still hurt by the things they did or said.
  • We can improve the way that people with disability and support workers work together if people understand how their actions affect other people.

The article is titled, Recasting ‘harm’ in support: Misrecognition between people with intellectual disability and paid workers.

Theatre, research and intellectual disability

This study aims to demonstrate how disability theatre contributes to inclusive research practice with people with intellectual disability. The title of the article is Disability Theatre as Critical Participatory Action Research (CPAR). Here is an excerpt from the abstract:

This article describes how self-advocates (individuals with intellectual disability), theatre artists, researchers, and a community living society create social justice disability theatre as critical participatory research. It demonstrates how disability theatre can contribute
to and advance inclusive research practice.

Disability justice-informed theatre as CPAR has direct relevance to people with intellectual disabilities. It also offers a platform where self-advocates’ diverse ways to communicate and be in the world are honoured. Mentorship generates opportunities for self-advocates to learn, practice, and develop research skills.

The theatre creation process (devising, developing, and refining scenes) is research in itself where tensions are recognized as sites of possibility. Future research should explore strategies, and protocols for power sharing and problem solving within disability theatre.

Autism: What we have heard

The Olga Tennison Autism Research Centre has responded to the NDIS Review Committee’s interim report, What we have heard. In responding they draw on evidence from their research and from autistic people.

The report has 29 recommendations that go beyond the NDIS review to all sections of society. The focus is on children – one in ten Australian children are participants in the NDIS. The recommendations are based on providing supports in everyday early childhood settings and with collaboration across governments and community services.

Longer term support needs are minimised if neurodevelopment vulnerability is detected early and community-based supports are put in place.

Front cover in red and white of the What we Have Heard Report.

When setting up the NDIS the Productivity Commission’s assumption was that about 1 in 150 children would need support. Research at that time showed it was closer to 1 in 69. Currently the estimation is 1 in 31 children are autistic. This figure is similar to those in other countries and indicates diagnoses not prevalence. In addition, autistic people are just as likely to have some of the same challenges neurotypical people face. Intersectionality applies here too.

Community supports in everyday settings

With the right community supports, children can make significant developmental gains and increase their chances of participating in mainstream settings. State and local governments should be key players in the quest to include autistic people in community activities, education and employment.

The title of the report is, Olga Tennison Autism Research Centre: Response to ‘What we have heard’ report. The research centre is based at La Trobe University. They aim to support autistic people to realise their full potential, and to actively participate in the community.

La Trobe University pioneered an autism screening tool which is used on children as young as 11 months. The SACS-R tool, or Social Attention Communication Surveillance Tool, is based on 15 years of research. Key points are infrequent or inconsistent use of:

  • gestures (waving, pointing)
  • response to name being called
  • eye contact
  • imitaton or copying others
  • sharing interest with others
  • pretend play
A young boy in a white T shirt is pointing at something in the distance. The background shows he is at the coast.

La Trobe University has devised a free app, called ASDetect to help parents detect autism in their child. the App is 83% accurate and is for children from 11 to 30 months.

This research paves the way for more autistic people to participate in everyday life and feel included. The Victorian Government has a state-based autism plan in recognition of the need for community support.

Occupational therapy & universal design

Is it enough for the occupational therapy profession to just focus on clients and their occupation goals? Barriers faced by people with disability, are complex and multi-faceted and go beyond specific individual solutions. So, at what point should occupational therapists engage in issues of social justice? And can universal design thinking help?

Disability studies emphasise the dignity, worth and equal rights of all people and draws attention to the discrimination faced by people with disability.

A man in a wheelchair is separated from the crowd by a low concrete barrier. Occupational therapy & universal design.

Two researchers, one from social science and one from occupational therapy, offer an interesting discussion on this topic. They argue that occupational therapy practice and research should incorporate social justice and universal design perspectives. They add that they should join with the disability community to call for a more just society. One way to do this is to also promote the principles of universal design.

Incorporating social justice and universal design perspectives more effectively requires a change of mindset and ways of working. Expanding Person-Centred and Person-Environment theories to understand social and structural barriers is one solution. The occupational therapy profession has the potential to pave the way for more equitable services and policies.

The title of the discussion paper is, Drawing on critical disability and universal design perspectives within occupational therapy and is open access.

From the abstract

Socio-political influences have gained increased attention within the occupational therapy profession. Critical disability studies question prevailing assumptions about disability and how disabling ideologies and practices are perpetuated in society. A universal design approach aims to address issues of inclusion and justice.

This paper discusses how the tenets of critical disability studies and universal design can contribute to occupational therapy practice and research.

We provide ideas on how practice can be guided by the tenets of disability studies and universal design to promote social equity.

Incorporating both perspectives in occupational therapy practice and research requires a change in mindset and ways of working. Occupational therapy knowledge needs to be expanded to scrutinise disabling hindrances hidden within social and structural spaces, and implemented in services.

We recommend working with disability communities to raise awareness and combat disabling barriers at various level of society.

Dilemma of autism disclosure

Choosing whether to disclose that you are autistic is an individual decision. But what happens when an individual tells others they are autistic? Under what circumstances do they disclose their autism? And how can this information help others decide about their own autism disclosure? These key questions were the focus of two studies by Aspect Research Centre for Autism Practice.

Feeling excluded and misunderstood has implications for both physical and mental health. Personal interactions are part of the story, but the way we design policies, places and services also add to exclusion.

There is a lot of research on disclosure for Autistic individuals; however, the information is not easy to understand or use when making personal decisions about whether or not to disclose.

Part of the front cover of the full report with a sign saying I am Autistic.

Study one – disclosing

Most participants participating in an online survey told at least one other person they are autistic. About one third told most of their regular contacts. Only 2% didn’t tell anyone. Half the participants preferred to tell people face to face. Delving deeper into the responses, a lot depended on who they told.

Telling healthcare workers, family and friends generally received a positive response. However, telling co-workers had a higher negative impact. If the individual feels that being autistic is part of their identity, they are more likely to tell others.

Study two – experiences

In study two, participants used a smart phone app to record disclosure opportunities over a 2 month period. Telling others in a conversation was the preferred way to disclose. The experiences of disclosing in different settings was generally positive overall. Surprisingly, disclosing at home had the lowest positive score while the community had a high score.

The researchers found that disclosure led to a wide range of reactions and the decision to disclose was influenced by the context. However, participants learned from telling others, and developing skills in disclosing was important.

Disclosure guides

The findings from these studies were used to inform a set of guides for autistic people and non autistic people. The Autism Spectrum Australia website has separate downloadable guides:

  • Disclosure opportunities resource guide for autistic people
  • Disclosure opportunities resource guide in Easy English
  • Supporting autistic people who may want to disclose guide for non autistic people
Autism disclosure guide infographic. Do I feel safe, Do I have a reason, Do I have emotional capacity, Am I prepared for the response.

The full report

The full report, I am Autistic: Disclosure experiences of Autistic adults, summarises the two studies with more detail than the guides. Two quotes from the report illustrate the importance of identity:

”I didn’t feel I had my own identity until I was diagnosed. I also never felt part of any community until I was diagnosed.”

“Finally knowing where I fit in life and being able to embrace that and then tell other people about my autism – it all is connected and leads to a greater me.”

8-Inclusion needs to prevent discrimination

The 7 Principles and the 8 Goals of universal design have their roots in the built environment and people with disability. We have moved on since their inception to thinking about how other marginalised groups can be included. With this thinking comes intersectionality where an individual can be a member of more than one of those groups. For example, a female refugee with a disability.

The 8-Inclusion Needs framework sits alongside the classic 7 Principles and the practical 8 Goals of universal design. Together they provide a more holistic view of the real lives of people.

A human head shape with a montage of photos of many different people.

The framework seeks to provide a new perspective for shifting the focus from a list of identities to addressing the needs of all people. As such it provides a guide for inclusive designs and interventions that eliminate discrimination. It also provides another perspective on the amorphous term “diversity”.

The 8-Inclusion Needs of All People framework

The results of the literature review formed the basis of the 8-Inclusion Needs framework. Briefly, they are:

1. Access – Ensuring all people can see and hear, or understand via alternatives, what is being communicated; and physically access or use what is being provided.
2. Space – Ensuring there is a space provided that allows all people to feel, and are, safe to do what they need to do.
3. Opportunity – Ensuring all people are provided opportunity to fulfil their potential.
4. Representation – Ensuring all people can contribute and are equally heard and valued.
5. Allowance – Ensuring allowances are made without judgement to accommodate the specific needs of all people.
6. Language – Ensuring the choice of words or language consider the specific needs of all people.
7. Respect – Ensuring the history, identity, and beliefs of all people are respectfully considered.
8. Support – Ensuring additional support is provided to enable all people to achieve desired outcomes.

Individual identities – a list

Identities included in the analysis of research on the lived-experience of underrepresented identities:

    • Gender
    • Race/ethnicity
    • Socio-economic status/class
    • Indigenous
    • LGBTQI+
    • Disability
    • Religion
    • Age
    • Immigrant
    • Illness (physical or mental)
    • Refugee
    • Veteran
    • Neurodiversity

The title of the article is, The 8-Inclusion Needs of All People: A proposed Framework to Address Intersectionality in Efforts to Prevent Discrimination. Published in the International Journal of Social Science Research and Review.

From the abstract

This paper begins by highlighting the current state of inclusion, and then reviews research on the application of intersectionality to address discrimination.

The literature review includes an overview of existing models designed to assist the application of intersectionality in reducing discrimination.

An analysis of research was carried out on the discrimination on 13 individual identities and 5 intersectional identities. A new framework called the 8-Inclusion Needs of All People is based on 8 common themes.

The framework is illustrated with recommendations for application in government and policy making, the law, advocacy work, and in organizations. This goal is to provide a useful framework for expediting social justice and equitable outcomes for all people.

Human rights video on ableism

The UN Convention on the Rights of Persons with Disabilities embraces human differences and disability as part of human diversity. People with disability have rights which must be respected, protected and fulfilled, just like everyone else. The UN human rights video on ableism explains succinctly.

Ableism is based on a value system that assumes people with certain body and mind characteristics must have a quality of life that is very low.

screenshot from the video on Human rights video on ableism.

The short video animation below aims to raise awareness of the barriers faced by people with disabilities in everyday life. The video is intended for the general public, advocacy organizations, policymakers, human rights defenders, and educators.

Other human rights videos in the United Nations series.

Legal capacity for all explains how people with disability are denied their rights because they don’t have supported decision-making available.

Participation of people with disabilities benefits all makes the case for involving people with disability in making decisions about their lives.

Sexual and reproductive rights of girls and young women with disabilities discusses abuse and neglect and harmful practices and forced sterilisations.

Ableism and urban planning

 long view of a Perth city mall with shops and cafes under awnings and trees for shade. Tall buildings are in the background. Urban planning.The COVID pandemic lockdowns have shown more people what it’s like not to be able to get out and about when you want to. But do the calls for “not going back to the way things were” include everyone? Lisa Stafford says that the planning profession and society have learned little. Planners, perhaps unwittingly, are still favouring the idealistic view of the “able body”. So we need to discuss ableism and urban planning.

In her article, Lisa Stafford explains how ableism is inherent in urban and regional planning. Planning is not neutral – it’s not value-free. Planners make decisions on what and who to plan for.  

“Time and again I have heard universal design omitted in the provision of social infrastructure…” Stafford writes. “Budget shortfalls”, and it’s “too hard” (read too costly) are their excuses. 

Talking about ableism

Where to start? Where you are now. Share and discuss readings with colleagues – look up “ableism” in Google. Low hanging fruit is checking your own ableism by asking “for whom are we planning?” Ableism intersects with other identities and experiences. Planners must think more deeply about the connection between planning, design and society.

Stafford advises we look to the work of the American Planning Association and their universal design approach. They promote intergenerational neighbourhoods and smart growth. Norway’s leadership in universal design is also a good reference. 

The chapter concludes with a short discussion on transport and active transport. 

The title of the article is, Planners, We Need to Talk about Ableism. The title of the open access special edition is Disability Justice and Urban Planning

Other articles cover bathrooms, physical access, disability and climate justice and an artist view of disability justice and planning.

There are several posts on the work of the Norwegian Government on this website that link to Stafford’s references.

 

Diversity and inclusion: not the same thing

The feet of two dancers. The woman is wearing red and white shoes and the man regular black shoes“Diversity is being asked to the party; inclusion is being asked to dance.” This is a great quote from Verna Myers. She is referring to the workplace and the employment and advancement of women and people of colour. It is relevant to all other groups because diversity and inclusion are both part of the movement for more inclusive and equitable societies.

The Harvard Business Review discusses this issue in Diversity doesn’t stick without inclusion. It is one thing to have a diverse population, but that doesn’t mean equity or inclusion will automatically follow. Diversity and inclusion are often lumped together in the employment context. They are assumed to be the same thing. But this is not the case.

In the workplace, diversity equals representation. Attracting diverse talent requires full participation to foster innovation and growth. This is inclusion. Getting diverse talent is one thing, including them fully is another. 

Diversity & Inclusion: Start Here

A hand-drawn graphic with faces of bright colours with big eyes. They are grouped in a bunch.

The Commons Social Change Library is about social change and driving social movements in Australia. While the context of their guide is about driving social change, most of the information is applicable in any situation. 

The Diversity & Inclusion: Start Here guide introduces key concepts and links to other resources. The key point is that inclusion is a social change movement and we can all do our part by including marginalised people in our ranks. That’s whether it’s the workforce, our local sporting team or our social change campaigns.

Carly Findlay is a disability activist who reminds us that disability is part of diversity. Carly’s video explains her experience. Judy Heumann’s TED talk is also worth a look. 

Kimberlé Crenshaw’s TED talk, The urgency of intersectionality is about race and gender bias. 

Kaytee Ray-Riek discusses marginalisation across the spectrum and ways of building trust and encouraging inclusive practice.  

Organisers of social justice events sometimes forget the basics of inclusion. Make your social justice event accessible spells out how to do it. 

Before people can get to an event they usually need information. The Internet is usually the first stop. So it’s important to Improve your website accessibility

There are many more resources on this website – you don’t need to be a campaigner to benefit from them. 

Brightly coloured books on a bookshelf with titles that represent social change.

The Commons Social Change Library is a not for profit organisation committed to educating for community action. They collect, curate and distribute the key lessons and resources of progressive movements around Australia and across the globe.

Editor’s note: I co-wrote a paper on inclusion being something where you have to wait for the “mainstream” group to invite you in. Inclusiveness is something that is present, it is happening now. You can see the slideshow version too which has some explanatory graphics.

What do Ableism and Ableist mean?

A man in a wheelchair is separated from the crowd by a low concrete barrier. Ableism and ableist.Disability rights, accessibility and inclusion have come a long way. But we are not there yet. Despite legislation, public policy statements, and access standards, it’s taken more than 50 years to get to this point. Ableism and ableist attitudes are alive and well. Yet many people aren’t aware of how this undermines inclusion and equitable treatment. The same goes for ageism. 

An article in Forbes magazine sums up the sentiments well. The word ‘ableism’ gives voice and substance to real experiences. But it can also discredit people for an offensiveness they don’t see or don’t agree exists. The title of the article is, Words Matter, And It’s Time To Explore The Meaning Of “Ableism.”

The Wikipedia definition explains Ableism “is discrimination and social prejudice against people with disabilities or who are perceived to have disabilities. Ableism characterizes persons as defined by their disabilities and as inferior to the non-disabled. On this basis, people are assigned or denied certain perceived abilities, skills, or character orientations.”

Ableism is expressed in ideas and assumptions, stereotypes, attitudes and practices. Physical and social barriers in the environment is also a form of ableism. Usually it is unintentional and most people are completely unaware of the impact of their words or actions.

Different types of ableism

Andrew Pulrang discusses both personal and systemic ableism. Here is his list on personal ableism.

1. Feeling instinctively uncomfortable around disabled people, or anyone who seems “strange” in ways that might be connected to a disability of some kind. This manifests in hundreds of ways, and can include:

      • Being nervous, clumsy, and awkward around people in wheelchairs.
      • Being viscerally disgusted by people whose bodies appear to be very different or “deformed.”
      • Avoiding talking to disabled people in order to avoid some kind of feared embarrassment.

2. Holding stereotypical views about disabled people in general, or about certain sub-groups of disabled people. For example:

• Assuming that disabled people’s personalities fit into just a few main categories, like sad and pitiful, cheerful and innocent, or bitter and complaining.

• Associating specific stereotypes with particular conditions. For example, that people with Down Syndrome are happy, friendly, and naive.

• Placing different disabilities in a hierarchy of “severity” or relative value. 

3. Resenting disabled people for advantages or privileges you think they have as a group. This is one of the main flip sides of condescension and sentimentality towards disabled people. It’s driven by a combination of petty everyday resentments:

• Disabled people get good parking spaces, discounts, and all kinds of other little unearned favors.

• Unlike other marginalised groups, everyone likes and supports disabled people. They aren’t oppressed, they are coddled.

• Disabled people don’t have to work and get government benefits for life.

Overcoming ableism: challenging values

Small golden stars scattered on a table. Overcoming ableism challenges values.Overcoming ableism takes more than attending a disability awareness workshop. It’s also more than checking out the right words to use when talking about disability. If things are to change for people with disability, we have to challenge values and assumptions. 

Andrew Pulrang writes that the stereotype of people with disability is one of fragility and weakness – it’s associated with illness. Disability services are ‘care’ services, not just services for practical assistance. Workplaces assume people with disability can’t handle the pressures of work. 

He concludes his article with, “The roots of ableism run deep. Sometimes to get at them we have to dig deeper, and disrupt not just our habits, but some of our most basic ways of thinking.” 

The title of Pulrang’s article is, Fighting Ableism Requires Us To Challenge Some Of Our Most Cherished Values

A last word

Pulrang concludes with a few reminders. People with disability can be ableist too. They grew up in an ableist society. Ableism isn’t a new ‘ism’ – it is a word that sums up longstanding oppression and injustice. So when it is used, don’t take it as an insult. Ableism is a way of talking about a set of real experiences that people with disability experience. It’s a way to talk about them. 

Disability Reporting Handbook

Front Cover of Disability Reporting Handbook showing a young man and woman. They are laughing together. Media Diversity Australia has a handbook for reporting on disability issues. This is a well researched document that covers more than the usual topics. It also has specific “how to” guides for interviewing people with different disabilities. The Disability Reporting Handbook is a good companion to the ABC guide to disability content – see below. 

The Handbook covers the usual introductions to disability and golden rules about language and images. It also covers:

      • Intersectionality with disability in relation to women, First Nations people, people from linguistically diverse backgrounds and LGBTQIA+ communities. 
      • Violence and disability, including support services available.
      • How to guides for interviewing people with disability covering physical, sensory, cognitive, psycho-social and neurodiverse conditions. 
      • A list of Useful Contacts

 “The biggest barrier to full participation in the community for people with disability is attitude. Most Australian’s with disability experience the soft bigotry of low expectations”. (Graeme Innes, former Disability Discrimination Commissioner)

The  contributors have varied backgrounds in media and journalism. They consulted widely in the development of this comprehensive publication. Media Diversity Australia is a not for profit organisation that believes the media should reflect the cultural diversity of Australia. They have another publication, Who Gets to Tell Australian Stories?  

ABC guide to disability content

ABC journalist Nas Campanella. ABC guide to disability content.
ABC Journalist Nas Campanella

Australia’s public broadcaster, the ABC, has a guide to disability content. The guide covers appropriate behaviour and language in reporting and portraying disability content. It’s applicable to all ABC platforms including social media. It’s a good guide for all journalism and anyone new to interacting with people with disability.

The title of the guide is, Reporting and Portraying Disability in ABC Content. Arranging and conducting interviews, asking questions, language and terminology are all covered. Many journalists are up to date with their language now, but images are still a problem. And there is still a tendency to place people with disability into a victim or a hero role. 

The information about arranging and conducting interviews includes checking on any assistance or support they might need. Saying someone is inspirational is not appropriate. So check facts and don’t run with assumptions.

Photographers and camera operators need similar information to avoid showing pitying pictures or focusing on assistive equipment. Wheelchairs are not the sum total of people with disability.

Images of disability in journalism

The guide gives the following advice: 

    • Avoid portraying individuals as objects of pity. For example, photograph a person using a wheelchair at their level, not looking down on them. Powerful, positive reinforcing images are generally preferred, depending on the editorial context.
    • Only show the person’s disability if it is critical to the story.
    • Avoid focusing on equipment unless that is the focus of the story. Avoid gratuitous cutaways of wheelchairs, canes, hearing aids and other devices.
    • Avoid having the talent’s carers or family in photos or video unless they are also part of the story. Show the talent as having autonomy over their own lives.
    • Avoid showing the person with disability as isolated from the community unless that is the focus of the story.
    • Avoid using stock images as the majority reinforce stereotypes of disability and are of poor quality.
    • Avoid using images of mobility aids, such as photos of wheelchairs, as a generic image for a story about disability.
    • Do consider using people with disabilities to illustrate stories that are not about disability, to show they are a regular part of the community.
    • Do aim for diversity in imagery of people with disabilities – people from ethnic minorities and gender diverse people also live with disability and are often even more marginalised.
    • Do show people with disabilities doing normal things, such as catching public transport or shopping, but avoid making it ‘inspiration porn’. It’s just life.
    • Do show people with disabilities in positions of power and authority.

Image from ABC News website

 

Inclusive Cities: More than a ramp

a series of black icons on white background depicting people of all shapes and sizes, including a baby in a stroller, a person with a can and a wheelchair user. Inclusive cities - more than a ramp.
Some disabilities are invisible

Depending on personal experience, the term “access and inclusion” means different things to different people. The idea of who is currently included and excluded is often framed by this experience. People with invisible disability are easily left out of “access and inclusion”. For example, people with intellectual disability, different cognitive conditions, and people with mental health issues. Consequently, inclusive cities need more than a ramp and tactile markers. 

Inclusion is one group looking at another group and thinking about "Them". Inclusive Cities - more than a ramp.
Inclusion is one group agreeing to include another.

Planning and social policies talk of inclusive cities and social sustainability, but making it happen is another matter. Gains have been made in terms of accessibility for wheelchair users and people with vision impairment. That’s because it is written into the building code. What we don’t have is a code for all the other types of disability that are, at first glance, invisible. People with intellectual disability are one group who find themselves sitting outside of community activities. So, in what ways can we ensure their inclusion in the city?

A literature review of research papers on this topic found some useful information. Australian researchers applied the ‘Inclusive Cities Framework’ to the papers and found that local authorities can take actions to improve inclusion at a local level. For the most part they involved community groups, local businesses and civic activities.

Key points

    • Information and support for community groups, local businesses, potential employees and potential mentors.
    • Shared activities (both structured and unstructured) to share learning, activities and build relationships
    • Conversation and sharing of stories – in formal and informal ways, to share information and networking both across and within community groups and all citizens, whether they identify as having an intellectual disability, as potential employers, employees, and com-munity leaders. 

Inclusion of people with intellectual disability relies on having interpersonal relationships within the community. It has to be more than just being on the member list or in the room with other people. Quality of participation is the point of an inclusive city. 

The title of the article is: Towards inclusive cities and social sustainability: A scoping review of initiatives to support the inclusion of people with intellectual disability in civic and social activities. It is an open access article.

Highlights

    • Aiming to be inclusive for all does not automatically lead to participation for all people.
    • People with intellectual disability continue to be excluded from the full experience of cities – despite an awareness of social sustainability.
    • This paper identifies how people with intellectual disability are impacted by policy and practices around citizen involvement.
    • The experiences of people with intellectual disability inform how the Inclusive Cities Framework is understood and applied to define meaningful participation for all people.

From the Abstract

The inclusion of people with intellectual disability in cultural and civic activities is an important particularly in the context of supporting the social sustainability of our local communities and cities. Local governments and community organisations are poised to play a pivotal role in the inclusion of people with intellectual disability.

We undertook a scoping review of local inclusion building initiatives in Australia and other countries that helped connect people with intellectual disability with their local community. The role people with intellectual disability played in the assessment and evaluation of these resources was also examined.

Analysis of the results offers opportunities to consider the ways in which the personal preferences of people with intellectual disability can be interwoven with structure and levels of participation to improve social inclusion in their local communities.

From the Editor: I wrote a conference paper on inclusion and inclusiveness. See the post on What does Inclusion really mean? 

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