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The Citizen
22-05-2025
- Politics
- The Citizen
Rethinking Disability Representation: The role and limitations of disabled people's organisations
Disabled People's Organizations (DPOs) are crucial vehicles for advancing the rights and inclusion of persons with disabilities globally. Broadly defined, a DPO is an organization controlled by and primarily composed of people with disabilities. This 'nothing about us without us' principle is fundamental to their legitimacy and effectiveness. DPOs serve as vital platforms for advocacy, mutual support, and the collective articulation of the disability community's needs and aspirations. Nationally, DPOs frequently contribute to policy direction, offering invaluable perspectives and lived experiences that shape legislation and programs. However, their contribution often manifests as a 'forum' rather than a 'council,' a distinction that significantly impacts their influence, particularly when engaging with government. Forums are typically informal platforms where ideas, experiences, and perspectives are exchanged. They serve as consultative spaces without formal decision-making powers. Forums are excellent for fostering dialogue and building solidarity among stakeholders but are not designed to enforce or implement policies. Councils, on the other hand, are formal decision-making bodies often recognized by law or policy frameworks. They are empowered to influence, develop, and oversee the implementation of programs and policies. Councils carry legitimacy and authority that forums inherently lack. The importance of a council in the disability sector, especially when partnering with or working with government, cannot be overstated. A council structure allows for a more structured and authoritative engagement. When DPOs participate as a council, their recommendations carry more weight; they can negotiate, hold government accountable, and jointly implement initiatives. This formalised partnership fosters a sense of shared ownership and responsibility, moving beyond mere consultation to active collaboration. Without the authority of a council, DPOs often find themselves in a reactive position, responding to government proposals rather than proactively shaping the agenda from a position of equal partnership. This often leads to a tokenistic engagement rather than a genuine collaboration that can lead to impactful change. A significant weakness of the current DPO landscape, both nationally and internationally, is the glaring omission of a dedicated focus on local government issues. Despite the critical impact of local policies on the daily lives of persons with disabilities, national and international disability policies rarely delve into the intricacies of local governance. This oversight means there are effectively no DPOs solely dedicated to addressing issues at the municipal or community level. The United Nations Convention on the Rights of Persons with Disabilities (UNCRPD), for instance, while a groundbreaking international treaty, primarily focuses on state parties' obligations at the national level. While its principles are universally applicable, it does not explicitly mandate or provide guidance on how local governments should implement these rights, nor does it typically inspire the formation of DPOs focused on local bylaws, accessibility of local infrastructure, or community-level service delivery. Take a look at its Article 19 which focuses on living independently and being included in the community. While it advocates for community integration, it does not provide guidance on how local governments can adapt infrastructure or services to meet the needs of persons with disabilities in rural or underserved areas. This creates a disconnect between grand policy pronouncements and the lived realities on the ground. The absence of DPOs dedicated to local government issues has profound consequences. Local governments are responsible for essential services that directly affect the lives of persons with disabilities, including public transportation, accessible infrastructure (sidewalks, ramps, public buildings), local employment initiatives, community health services, and recreational facilities. When DPOs are primarily focused on national policy, these critical local issues often fall through the cracks. For example, a national policy on inclusive education might exist, but without local DPOs advocating for accessible school buildings, specialized teaching resources, or inclusive extracurricular activities within a specific municipality, the policy's impact remains limited. This also means that disabled people at the grassroots often feel unheard and unrepresented, as the national DPOs may be too far removed from their immediate concerns. To bridge this critical gap and strengthen the overall disability movement, DPOs must map a way forward by establishing regional structures. These structures should include regional disability councils dedicated to addressing local issues, even within a national framework. These regional councils would serve as formalized bodies with a clear mandate to engage with local government entities, advocate for specific local policy changes, monitor the implementation of accessibility standards in public spaces, and ensure that local service delivery is inclusive and responsive to the needs of persons with disabilities within their specific geographic area. Such a decentralised approach would empower local disability advocates, foster stronger community engagement, and ensure that national policies are effectively translated into tangible improvements at the grassroots level. By forming regional councils, DPOs would transition from being mere forums for discussion to authoritative bodies capable of driving concrete change in collaboration with local authorities. This shift would not only enhance the effectiveness of DPOs but also significantly improve the lives of persons with disabilities by addressing the very real, day-to-day barriers they encounter in their own communities. (Lucky Tumahole is a Disability Advocate, this is his opinion) At Caxton, we employ humans to generate daily fresh news, not AI intervention. Happy reading!
The Hindu
14-05-2025
- General
- The Hindu
Railway Ministry replaces 'mentally retarded' with 'intellectual disability' in concession forms
The Railway Ministry has decided to replace the term "mentally retarded persons" with "persons with intellectual disability" in concession forms issued to persons with disabilities seeking discounts in train journeys. "The Ministry of Railways has decided to replace the term 'mentally retarded persons who cannot travel without an escort' with 'persons with intellectual disability who cannot travel without an escort'," said a ministry circular dated May 9 addressed to the principal chief commercial managers of all the railway zones. Officials said terms like "mentally retarded" have negative connotations besides sounding offensive. "The move was long overdue. The new concession certificate forms will incorporate the changes from June 1," a railway official said. However, the circular also enclosed a revised performa of the concession certificate form, which used terms such as "handicapped" and "divyangjan" for other disabilities, raising concerns among disability rights advocates and activists. "The concession certificate form for orthopaedically handicapped/paraplegic (person/patients) who cannot travel without an escort/persons with intellectual disabilities who cannot travel without an escort/persons with hearing and speech impairment totally (both afflictions together in the same person)...," the revised proforma read, specifying three categories of persons with disabilities who are offered travel concessions. Activists, while welcoming the changes and saying they should have been implemented earlier, pointed out some "objectionable" words that still remain in the revised concession form. 'The Ministry of Railways is always slow to respond, but better late than never. The Supreme Court has already issued a handbook on inclusive language,' they said. "We welcome the shift from the 'R-word' to 'intellectual disability', but the Railways is still engaged in piecemeal corrections," Satendra Singh, director and professor at the University College of Medical Sciences and Guru Teg Bahadur Hospital, respectively, said. "Even the revised concession forms continue to use euphemistic and controversial terms like 'handicapped' and 'divyangjan',' Mr. Singh said. Some activists said a previous order from the chief commissioner for persons with disabilities banned expressions such as 'handicapped', while the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD), which India has ratified, also uses the term "persons with disabilities". The circular, stating other provisions, said, "The certificate already issued in the old proforma before 01.06.2025 shall remain valid till the expiry of the validity period. There shall be no change in the railway concession certificate for 'blindness'." "Zonal railways may print the revised proforma and make it available at all locations/stations to avoid inconvenience. Necessary instructions shall be issued to all concerned," it added.
Wales Online
14-05-2025
- Health
- Wales Online
'I'm disabled and 99% bed-bound but live life to the full - why the assisted dying bill is wrong'
'I'm disabled and 99% bed-bound but live life to the full - why the assisted dying bill is wrong' Nicki Myers has a condition which means she is barely ever able to leave her bed but says pressures from elsewhere could impact decisions on whether people live or die Supporters of the "Not Dead Yet" campaign, previously protested outside the Houses of Parliament (Image: Getty Images ) Nicki Myers has a condition which means she can barely leave her bed. The 52-year-old has pulmonary fibrosis which means she is 99% bed-bound. But she says with the help of her local hospice she is still able to live life to the full. But she fears moves to introduce assisted dying to the UK could leave people in her position facing choices over whether to live or die. Now she has joined with other disabled campaigners to argue the Westminster assisted dying Bill violates their rights under a United Nations (UN) convention. And they say their voices have been 'ignored' in the debate. The move is being backed by campaign groups including Disabled People Against Cuts, Disability Rights UK and Not Dead Yet UK. Nicki, who lives in Cambridge, is making a complaint alongside Essex-based Nicola Waters, 51, calling on the United Nations to declare that the passage of assisted dying legislation violates the UN Convention on the Rights of Disabled People (UNCRPD). Ms Myers said she was given five years to live seven years ago. She said: 'I was motivated to be a complainant in this case because I believe the way this legislation has been introduced, as a Private Members Bill, has meant the voices of people in my position (those who want to keep living as well as possible for as long as possible, and with good quality services) have been ignored. 'I also believe the timing of this Bill is wrong. When social security, fuel allowance, health, social care and palliative care services are all simultaneously under threat, it is not the right time for people to be asked if they want assistance from the state to end their lives.' Article continues below Ms Waters, who has the progressive neurodegenerative condition Motor Neurone Disease (MND), said she believes opportunities to make the Bill safer in recent months have not been taken. She fears people are being offered death rather than care. She said: 'This Bill will see those of us who live with terminal illness being offered suicide rather than the care and treatments we need to live. Numerous amendments that would have made the Bill safer have been voted down. As a result, I could be offered assisted suicide at every medical appointment I have.' The complaint contains multiple arguments, including a claim there has been a lack of pre-legislative consultation or scrutiny; the Bill has been rushed; a failure to publish accessible formats of the Bill and related material; a failure to recognise the importance of engaging with organisations run and controlled by deaf and disabled people; and inadequate arrangements for hearing from these groups at committee stage. Silent Witness actor Liz Carr is a disability rights campaigner and a member of the Not Dead Yet group (Image: Getty ) Actor and disability rights campaigner Liz Carr has backed the complaint, saying it feels as though the voices of disabled people have been 'sidelined' in the debate. She said: 'Considering the fact that this Bill is very much about disability (the majority of terminally ill people come under the Equality Act definition of disabled), it is shocking to me that the voices of disabled people's organisations have not been adequately heard so far. 'Varied groups of disability rights organisations should have been invited to give evidence at the committee and to do this effectively, sufficient time to prepare was needed and preparatory information in accessible formats should have been provided. Particularly during committee stage, the amount of information being shared, that we need to comment on is practically impossible to read through without the time to do this comprehensively and without the information being provided appropriately and accessibly. It also feels that our voices have been sidelined, marginalised even, as not particularly relevant to this Bill.' Article continues below Help in a crisis If you're having thoughts about suicide, are harming yourself or have considered self-harm, it's important to tell someone. These organisations give immediate support: Your local 24/7 NHS crisis line: at or visit Under 35? Visit call 0800 068 4141 (lines are open 24 hours every day of the year), text 88247 or email pat@ If you do not feel you can keep yourself or someone else safe, call 999. The Bill is supported by MP and disability rights advocate Marie Tidball. She secured amendments to ensure the establishment of independent advocates to support people with learning disabilities, autism or mental health conditions and to set up a disability advisory board, and has confirmed she will vote yes again at the third reading, feeling assured safeguards have been strengthened. She told reporters last month: 'I can say, as someone who has looked at legislative scrutiny over the course of the last 20 years, this is the most extraordinary, deliberative cross-party process I've ever seen.'
Irish Examiner
07-05-2025
- Politics
- Irish Examiner
Minister instructs school patrons to review enrolment policies for special classes
School patrons have been directed to review their enrolment policies for special classes following a review that highlighted 'concerning' clauses and criteria that could limit autistic students' access to education. Minister for education Helen McEntee has instructed the school patrons, who are responsible for enrolment policies, to initiate the review after the Department of Education's Inspectorate published its findings. Carried out between last September and December, the review looked at the admission policies of 30 schools, including 15 post primary schools, and 15 primary schools. The review identified issues in 14 out of 15 post primary schools, and 12 out of the 15 primary policies, "raising significant concerns", said chief inspector Yvonne Keating. Some admissions policies required children to be able to participate in mainstream lessons as a condition for admission, while other clauses 'reserved the right to withdraw the offer of a place based on a perception of the student's behaviour.' The review of policies also indicated that many schools use the possibility of a child displaying behaviours that may pose a risk to the health and safety of others as a basis for exclusion from a special class. The report noted that "clauses that use perceived behaviour as a criterion for admission to a special class may imply that children with the greatest level of need cannot be supported to regulate their behaviour". "In addition, it is not possible to predict how children will respond to the structure of the school, the special class environment and to the school's support and provision." The inspectorate also noted that the way in which some schools interpret their responsibilities under the Education Act 1998 is 'leading them to discriminate against those children with the greatest level of need'. 'This approach, which unduly qualifies the right of some children to an inclusive education, does not acknowledge the impact and influence of interconnected environmental systems on their development.' 'It does not recognise how the culture and systems in place in a school can positively impact on children and their experience of and interaction with school.' This qualified approach to inclusion may also not align with Ireland's commitments to inclusive education under the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD), it added. Multi-denominational schools Meanwhile, school patron body Educate Together has called on Government to act on increasing the number of multi-denominational schools to improve choice for parents. Educate Together is the largest multi-denominational school patron in Ireland, having opened 50 schools since 2013. However, as no new schools are planned to open, it is calling for action on the schools reconfiguration for diversity initiative. Representatives from Educate Together met with TDs at Leinster House on Wednesday. Demand for Educate Together schools continues to grow, but 90% of primary schools remain under Catholic patronage, said Emer Nowlan, chief executive. "The successful transition of the first Catholic school to Educate Together opens up a pathway for others to follow, and there is broad support now for reconfiguration. We are calling on the new Government to proceed with the promised national survey of parents, and to support school communities that decide to transfer, so that more families can access this popular option." Read More Multi-denominational secondary school enrolments exceed Catholic counterparts
Irish Examiner
07-05-2025
- Politics
- Irish Examiner
Grace is not a victim of unfortunate oversight, but a citizen whose rights were repeatedly violated
Living as a disabled woman in Ireland means being underestimated, having your capacity constantly questioned regardless of your impairment, being infantilised, silenced, excluded, and rendered a nuisance. As women, we are marked by difference. Cultural and institutional memory often omits us, except for moments of public shame; even then, we are not centred — merely exposed. The story of Grace, a non-speaking, intellectually disabled woman left in an abusive 'foster' home for decades, is not just one of personal harm. Like many wrongdoings in Ireland, it is cloaked in euphemism, delayed accountability, and procedural malpractice. As a nation, we are culpable of collusion and cultural dissonance. In 1989, Grace was placed by the State in a 'foster' home that was never assessed or registered for foster or respite. The placement wasn't an oversight; it was a bureaucratic gamble with a disabled child's life. For decades, the State looked away. Reports of abuse circulated for years. The first real public conversation about vulnerability and disability emerged much later, amid outrage sparked by the Ryan Report (2009) and the Áras Attracta scandal (2014). These moments should have created a lasting national transformation, but outrage without structural change is merely a performance of eloquent rhetoric claiming shock and disgust. There is an inertia surrounding the abuse and mistreatment of disabled children and adults in this country. The Farrelly Commission and the State's decision not to proceed with the second phase has left 47 children unaccounted for. Ireland has signed the UN Convention on the Rights of Persons with Disabilities (UNCRPD). However, it has still not ratified the Optional Protocol to the Convention Against Torture (OPCAT), which would allow for independent monitoring of settings where people are deprived of liberty. Ireland's discourse surrounding disabled lives is reductionist, patronising, and insulting in its reporting of Grace; this insulates systemic actors from critique. News coverage of her situation often fails to centre her as a person with rights. Cultural ableism thrives when language strips disabled people of our complexity, autonomy, and dignity. Philosopher Miranda Fricker describes this phenomenon as epistemic injustice — when someone is denied credibility or recognition as a knower of their own life. Grace, through her legal team, submitted extensive materials to the Farrelly Commission, but none were included. The result was a 2000-page report about her, from which her mediated voice was excluded. The Farrelly Commission, established in 2017, arrived late and left early. Phase two — which was intended to explore the experiences of 47 additional children placed in the same abusive home — was abandoned. Officially, this was deemed 'too complex.' The omission of the second phase is not merely a policy gap but an ethical failure. It denied others like Grace - such as Frances O'Keeffe, featured in these pages yesterday - the opportunity to name their harm and be heard. Here, we encounter profound cultural dissonance: policies, practices, and procedures treat disabled lives, voices, and experiences as inconvenient. The disability lens is rarely included as a perspective in public inquiry and never as the central framework. We are not considered worthy of an easy-to-read format or an executive summary. Grace's status as a ward of court meant she had representation and a right to speak; yet, the inquiry into her treatment refused to include her submissions. Throughout the Farrelly Report, there is no trace of her as a legal subject, no evidence of her, and no formal communication with her by the Commission. Grace, through her legal team, submitted extensive materials to the Farrelly Commission, but none were included. The result was a 400-page report about her, from which her mediated voice was excluded. File picture: iStock Grace's narrative is gendered. Most abuse cases in institutional care, such as Áras Attracta, involve disabled women. Misogyny, like ableism, is embedded in the perception of harm as minimal. Disabled women often experience multiple forms of erasure: we are deemed too dependent to consent, too marginal to protect, and too complex to be believed. This erasure is linguistic as much as legal. Reports often use the passive voice — 'mistakes were made,' 'oversight failed.' When the language of bureaucracy overtakes the moral clarity required to name harm, disabled women like Grace become collateral damage in the pursuit of institutional self-preservation. The facts of the case are not ambiguous. Grace was placed in an un-inspected foster home. She remained there for 20 years despite a documented history of abuse concerns. The State had multiple opportunities to intervene — and chose not to. In 2017, the Farrelly Commission was formed. In 2024, it issued its report — over 2000 pages, €13m spent — and Grace's voice was still absent. Grace is not a singular failure but a symbol of systemic neglect. Her story is one chapter in a broader narrative that Ireland has yet to confront: the persistent, patterned erasure of disabled people from our histories, protections, and safety. If justice is to mean anything, it must begin with truth. That means revisiting the Farrelly Report—not with neutrality but with moral clarity. It means reinstating phase two. It means recognising Grace not as a victim of unfortunate oversight but as a citizen whose rights were repeatedly violated. Like so many others, Grace's voice will remain silent in the public record until we rewrite it—not posthumously, but now, while we still have time to act. Dr Rosaleen McDonagh is a playwright from The Traveller community.
