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A Global Agenda for Inclusive Recovery: Ensuring People with Intellectual Disabilities and Families are Included in a Post-COVID World

Inclusion International
June 2021

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This report documents the experience of exclusion of people with intellectual disabilities and their families during the COVID-19 pandemic. These experiences reveal pre-existing structural inequalities that affected the lives of people with intellectual disabilities and their families before COVID-19, during the pandemic, and beyond, and this report raises up the voices of those most excluded in a time of global crisis and demands an inclusive COVID-19 recovery.

 

This report includes the experiences of people with intellectual disabilities and families across eight different issue areas. Across these themes, we examined how and why people with intellectual disabilities were left out and excluded in pandemic responses, what pre-existing conditions and inequalities contributed to their vulnerability and exclusion, and how future policy structures could begin to address both this immediate and systemic exclusion.

 

Together, these experiences and policy solutions form our global agenda for inclusive COVID-19 recovery, an action plan to ensure that government efforts to ‘build back better’ are inclusive of people with intellectual disabilities and their families.

COVID19: Self-advocacy organisations' strategies and response

Inclusion International
May 2020

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Some strategies for dealing with COVID-19 employed by contributing self-advocacy organisations are discussed. Five panellists talk about work in their own countries, presenting and sharing knowledge, experiences and resources for all self-advocates everywhere.

COVID19: Impact, advocacy and outreach

INCLUSION INTERNATIONAL
April 2020

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How some organisations are overcoming the challenges of COVID-19 for persons with intellectual disabilities and their families was discussed. Speakers were from Arc of the United States, Inclusion Europe and Canadian Association of Community Living.

Enabling Education Review Issue 8 - 2019: Family involvement in inclusive education

CORCORAN, Su
LEWIS, Ingrid
Eds
2019

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Articles in this issue include:

Working together to advocate for our children in Trinidad and Tobago

The inclusion of deaf children in Malaysia: parental support and advocacy

Family-mediated intervention to support inclusion in Bulgaria

Creating inclusivity and diversity through a parent support group in Kolkata, India 

The positive impact of family involvement in inclusive education, Tetouan, Morocco

Decolonizing schools: Women organizing, disability advocacy, and land in Sāmoa

ANESI, Julianne
2019

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In the 1970s and 1980s, Sāmoan women organizers established Aoga Fiamalamalama and Loto Taumafai, two educational institutions, in the independent state of Sāmoa. This article examines these schools’ support of students labelled as ma’i (sick), specifically those with intellectual and physical disabilities. Through oral histories and archival research, I show the vital role performed by the women organizers in changing the educational system by drawing attention to the exclusion of disabled students. I focus on the collective labor of Sāmoan women and their influence in decolonizing schools. In this regard, the women organizers used Sāmoan concepts of fa’a Sāmoa (culture), fanua (land), and tautua (service) as ways to redefine the commitment of the education system. This is a story about daring to reimagine indigenous disabled bodies and their futures through knowledge systems, theory, and literature.

 

Disability & the Global South (DGS), 2019, Vol. 6 No. 1

Precarious lives and resistant possibilities: the labour of people with learning disabilities in times of austerity

BATES, Keith
GOODLEY, Dan
RUNSWICK-COLE, Katherine
2017

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This paper draws on feminist and queer philosophers? discussions of precarity and employment, too often absent from disability studies, to explore the working lives of people with learning disabilities in England in a time of austerity. Recent policy shifts from welfare to work welcome more disabled people into the job market. The reality is that disabled people remain under-represented in labour statistics and are conspicuously absent in cultures of work. We live in neoliberal- able times where we all find ourselves precarious. But, people with learning disabilities experience high levels of uncertainty in every aspect of their lives, including work, relationships and community living. Our research reveals an important analytical finding: that when people with learning disabilities are supported in imaginative and novel ways they are able to work effectively and cohesively participate in their local communities (even in a time of cuts to welfare). We conclude by acknowledging that we are witnessing a global politics of precarity and austerity. Our urgent task is to redress the unequal spread of precaritization across our society that risks leaving people with learning disabilities experiencing disproportionately perilous lives. One of our key recommendations is that it makes no economic sense (never mind moral sense) to pull funding from organisations that support people with intellectual disabilities to work.

Global report: Self-Advocacy for inclusion

INCLUSION INTERNATIONAL
November 2016

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Across the Inclusion International network, many individuals and organisations took part in workshops, surveys and interviews to report:

  • what self-advocacy means to them
  • what good support is 
  • how organisations can be more inclusive
  • the vital role that families play in empowering self-advocacy.

This report provides a snapshot of work, and has some useful information for self-advocates, supporters, organisations and families. As well as containing the results from the global survey, interviews and workshops, this report also provides some useful guidance for anyone who wants to make the world more inclusive for people with intellectual disabilities.

 

A website (www.selfadvocacyportal.com) has been developed to share good practice and resources.

Young people with intellectual disability—The role of self-advocacy in a transformed Swedish welfare system

TIDEMAN, Magnus
SVENSSON, Ove
2015

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A growing number of young people in Sweden with intellectual disability have organized themselves during the last 15 years in self-advocacy groups for socializing, empowerment, and expressing opposition to the norms and attitudes in a society that labels them as disabled. At the same time, the Swedish welfare system has transformed dramatically with processes of far-reaching individualization, closure of the major institutions, decentralization of responsibility from the state to local governments, and an emerging welfare market where service users are turned into customers. The aim of this article is to analyse and discuss the significance of self-advocacy in the new welfare context. Data were collected over a period of more than 10 years using repeated interviews with members of two self-advocacy groups and participation observations. Findings suggest that participation in self-advocacy groups opens up members for increasing health and well-being through new roles and identities, and it strengthens their control over everyday life. Support is still needed, however, but in new ways; otherwise, the restrictions of the institutions will simply be reconstructed in the new welfare system.

A qualitative study: Barriers and support for participation for children with disabilities

MARIE, Anne
HANSEN, Witchger
SIAME, Musonde
VAN DER VEEN, Judith
2014

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Background: This qualitative–exploratory study examined the barriers to participation amongst children with disabilities in Lusaka, Zambia, from the mothers’ perspective.

 

Objectives: The objectives of this study were to understand how mothers of children with physical and cognitive disabilities who engaged their children in community-based rehabilitation (CBR) services in Lusaka, Zambia, perceived and described (1) the level of support they received and the barriers they encountered in terms of their child’s meaningful social participation; (2) the use and awareness of these barriers to identify and pursue advocacy strategies; and (3) hopes for their child’s future.

 

Methods: Data were collected through semi-structured interviews with each mother in her home.Results: Findings revealed both support and barriers to the child’s social participation in relationship to their family, friends and community. Support also came from the CBR programme and mothers’ personal resourcefulness. Mothers identified their child’s school,their immediate environment and financial burdens as barriers to participation as well as their own personal insecurities and fears. Strategies to overcome barriers included internal and external actions. The mothers involved in the study hope their child’s abilities will improve with continued CBR services. Some mothers described a bleak future for their child due to alack of acceptance and access to education.

 

Conclusion: The findings of this study suggest the significant role the mother of a child with a disability plays in her child’s social participation. Recommendations include enhancing CBR programming for families, especially for mothers, and advocating on behalf of children with disabilities and their families to attract the attention of policy makers.

Recognising the agency of people with dementia

BOYLE, Geraldine
May 2014

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People with dementia have been assumed to possess weak or even no agency, so this paper provides a novel contribution to academic debate by examining their actual potential for agency. The author draws on findings from a qualitative study of everyday decision-making by people with dementia that aimed to iden- tify the role of social factors (such as gender) in influencing their involvement in decisions. Whilst decision-making constitutes a form of deliberative agency, the research also identified when agency was alternatively habituated, embodied or emotional. The Economic and Social Research Council-funded research was undertaken in the North of England. Existing theoretical perspectives on agency are critiqued, particularly in relation to rationality, language and individualised agency. The study highlighted that people with dementia who lack deliberative capacity can nonetheless demonstrate creative capacity for agency. A more expansive concept of agency is needed in social science theory that is informed by the experiences of cognitively disabled people.

Adult ward should have right to vote : court

JAPAN TIMES
March 2013

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This short article reports on a landmark ruling in Tokyo where the court ordered that an adult woman with Down Syndrome, who had been barred from voting due to her intellectual disability, was entitled to vote in all elections. The law barring persons with intellectual disabilities from voting was held to unconstitutional. This article will be of interest to anyone interested in the right of people with disabilities participating in political and public life

Mental health in post-crisis and development contexts

PÉGON, Guillaume
September 2012

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This brief provides an overview of Handicap International's activities in mental health in post-crisis and development contexts. Handicap International’s mental health projects specifically address the mental health of people with psychosocial and mental disabilities or with intellectual disabilities
PP brief No 3

Inclusive democracies require voting rights for people with disabilities

NEIER, Aryeh
November 2011

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This blog post presents the story of a woman with Down Syndrome who initially was prevented from voting in Peruvian elections because of her intellectual disability but successfully won her right to vote. The article concludes by encouraging inclusive policies that support the participation of people with disabilities in political life
Note: This post is part of a blog series that reflects on The Open Society Foundations work to advance the rights of persons with disabilities around the world

Employment leads to independent living and self-advocacy : a comparative study of employed and unemployed persons with cognitive disabilities

SHARMA, Raj Narayan
SINGH, Shobra
KUTTY, A T Thressia
2006

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[Authors' abstract] : The main purpose of this study was to measure the effect of employment on independent living and self-advocacy of persons with cognitive disabilities. The other purposes of the paper were to measure the effect of severity of disability and type of employment, on self-advocacy skills and independent living skills. A ten item-five point rating scale was developed to measure the independence level and self advocacy of persons with cognitive disabilities. A qualitative and quantitative study of fifty unemployed and fifty employed persons with cognitive disabilities was carried out. The results were statistically analysed and a significant difference was found between the groups, with the unemployed persons with cognitive disabilities scoring significantly lower in independent living and self-advocacy skills. Those in open employment showed more independent living and self-advocacy skills than those in group employment. The practical implications of the findings of this study are discussed

Inclusion International

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This website promotes inclusion concerning all disability groups. It is translated into English, Spanish, French and German. It provides links to the organisation's regional programmes, as well as a list of publications on advocacy and human rights, self-advocacy, education, employment, social environment, family issues and services

UK disability history month

UK DISABILITY HISTORY MONTH (UKDHM)

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This website features a platform to feature the annual UK disability history month event which focuses on the history of disabled people’s struggle for equality and human rights. Disability history month details a specific annual theme aiming to celebrate the achievements of disabled people, to look at the disablism and oppression that they have been subjected to over time in all sorts of cultures, and to argue for the full equality that they are entitled to under human rights legislation. This website presents related news, events, resources and ways to get involved

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