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Newsletter

Newsletter of Voice of Vision Impairment (VVI) – July, 2020 to February, 2021

Below is a brief summary of some of our key (but background) moments which don’t necessarily make it onto the usual website of info@vvi.ie fare.

New Rep

January 2021 got off to a great start, with VVI gaining a new member of our reps team; that is, Ed Harper, based in west Cork, who has an outstanding record in rights-based campaigning, and we count ourselves very lucky to have the benefit of his wisdom.

David Nestor, our second Meath rep, has stepped back from much of his PPN role in order to concentrate on recovering from a serious illness, and we all keenly wish David a very speedy and long-lasting recovery. Many thanks to Gillian Stafford for temporarily, but very ably, stepping into David’s shoes as VVI rep on Meath PPN.

Irish Rail

In June 2020, the long and hard work by VVI’s Barry O’Donnell, campaigning for the provision of mobile phone numbers for commuter passengers wanting to contact “hub stations” for assistance, finally came to fruition. Some creases are still to be ironed out.

The mobile numbers are available at:
https://www.irishrail.ie/travel-information/accessibility-onboard-trains/access-dart-northern-commuter

Barry’s long campaign for better audio signage on Luas regarding dual destinations (e.g., Busaras or the Point), is also making some headway, with noticeable improvements on some lines. Ultimately, we push for platform announcements.

Prisoners with a Visual Impairment

VVI was proud to have attended a conference of civil society organisations with an active interest in The Optional Protocol to the Convention Against Torture and Other Cruel, Inhuman or Degrading Treatment or Punishment (OPCAT), and In particular, the National Preventive Mechanism (NPM) designed to indpendently monitor the conditions of Inmates in Irish prisons, as part of the UN Convention Against Torture (UNCAT0. VVI has an ongoing concern for the conditions of prisoners with visual impairments, and we look forward to having the resources and supports to be able to play our part in the NPM.

Bus Éireann

In August, 2020, VVI joined Bus Éireann’s Disabled User Group, with Barry O’Donnell as our talented representative. VVI is now represented on the Disabled User Groups of Irish Rail, Dublin Bus, and Luas, as well as Bus Éireann.

DPC Network

VVI is a founding member of the DPO Coalition, and in September, 2020, the Coalition became one of the five funded members of the Disability Participation and Consultation Network (DPC Network). In January, VVI officially became a member of the Network in its own right. The Network is the State’s effort at box-ticking Article 4.3 of the Convention on the Rights of People with Disabilities (CRPD). The Network’s start has been inauspicious, and we have concerns that it might be a white elephant, but all this can change if the State finally formally acknowledges the prioritisation of DPOs in consultations, as guaranteed under the CRPD.

DPO Coalition’s Shadow Report

On Wednesday evening, February 10th, eight VVI members, in our own break-out room, participated in the DPO Coalitions focus-group stage of research for the purposes of its shadow report on the State’s implementation of the CRPD, to be published later in the year. Themes covered included health, education, employment, and independent living. The meeting lasted for more than two hours, but genuinely, the feedback has been very positive, and it has given us a renewed confidence in Zoom in facilitating larger meetings of VVI.

Numbers were capped at eight, and so, we had not enough places to meet the demand. However, no-one will be left behind in having their voice count, and anyone who has not so far had a chance to take part, will have a chance in the next researches phases.

VVI’s own shadow report will focus on Article 4.3 of the CRPD, which is a crucial, but macro/legal component of the Convention. Without Article 4.3 being implemented, nothing else can follow. VVI continues to use our position as a national DPO to represent people with a visual impairment in our campaigning, on a daily basis, for accessible policies and design, based on the lived experience of our members, and this focus is always at the core of our overall project.

Regarding other aspects of disability, other DPO Coalition members are inviting outside participation in their own research projects.

AsIAm, the national DPO focussing on autism, is looking for written or recorded submissions regarding its shadow report on the CRPD, and is arranging two Zoom meetings, the first to be held on March 1st, with Alistair de Gaetano.

More information at
https://asiam.ie/webinar-education-rights-uncrpd/

The second is a Healthcare webinar on Wednesday 3rd March from 7-9., with Dr. Mary Doherty, an autistic doctor and researcher. She has co-written research on the barriers to Our link to the first talk with Alistair on Monday 1st March from 7-9 is now live:

More information at https://www.asiam.ie

Disabled Women Ireland (DWI), are inviting all women and non-binary people over the age of 18 who identify, sensory impairment, or mental health consition, as having a disability, to join them in responding to the State’s report on the CRPD. Accordingly, DWI invites relevant parties to three Zoom meetings on any of these dates:

  • Wednesday, March 3rd, 3-5pm
  • Saturday, March 6th, 11am-11pm
  • Monday March 8th, International Womens Day, 7-9pm.

To register, email disabledwomenireland@gmail.com by March 1st, with your name, date of the discussion you’d like to attend, and which topics you would like to discuss, your specific access requirements, if any. Written submissions are also welcome.

More details on www.disabledwomenireland.org

Right to Vote

In October, VVI’s Robbie Sinnott was a guest-speaker at the 10th birthday special webinar celebration of the Public Interest Law Alliance (PILA). It was through PILA that Robbie was able to take a case to the High Court in order to win the right to vote for people with a severe visual impairment – a case which he won in 2017. The theme of the webinar was ‘using the law to obtain rights’, a theme very close to VVI’s heart. VVI continues to work with the Dept. of Housing in order to make voting accessible to people with a severe visual impairment. The accessibility gap is still massive. This year will see the inauguration of a new election or voting commission, and we are hoping things will improve in the meantime, and afterwards.

Web Help

In November, Colin Eire, from Iconology.ie, kindly agreed to offer pro bono services in helping with our website and content. He joins the brilliant Trevor Lyons who has been doing the needful by himself up until now. We should say that the site is still very much under construction, and any shortcomings are not a result of Colin’s expertise, but of our own testing and feedback mechanisms which are still ongoing.

Milestone in Public Sector Equality Duty

Under the Human Rights and Equality Commission Act (2014), every statutory body must take steps to build the protection of the rights of minorities into its framework. Fulfilment of this obligation has generally been zero, or close to zero, since 2014. VVI is pleased to say that it was part of the first consultation of a Local Authority on implementation of its Public Sector Duty. In January, 2021, we participated in a consultative meeting with Meath County Council on its plans to take the Public Sector Duty obligations seriously. More information on the Public Sector Duty can be found at www.ihrec.ie

Call for Members

Membership of VVI is open to anyone in Ireland who has a visual impairment, and all are welcome, unconditionally (apart from the condition of being visually impaired). To join us, please write to info@vvi.ie, and you will be sent your membership number.It’s as easy as that. If you are already a member, please share our invitation to and with anyone you know with a visual impairment.

Issues

VVI reps are tirelessly campaigning on many fronts (most of which are not mentioned in this newsletter). We depend on the pool of expertise of our members. If you are a member of VVI, and if something is a significant problem for you, please let us know, and we will work on the issue in an inclusive way, and make sure that the perspective is counted in our policies and position papers, in line with our Constitution. Again, please contact info@vvi.ie.

Reminder

Anyone who wishes to take part in the DPO Coalition Consultation on your lived experience and issues relating to your visual impairment, which takes place at 7-9pm on Wednesday February 10th, please contact info@vvi.ie before noon on Tuesday. Your voice is not only welcome, it makes us who we are.

Categories
Disability

What is Disability?

There are two competing concepts of disability. To sum them up, the Social Model uses the term “disabled people,” because we are disabled by the system. The Medical Model uses “People with Disabilities,” as if our impairments are the cause of the discrimination against us and ultimately of our disability.

1. The Medical Model

In short, the medical model individualises and privatises disability, and institutionalises the problem. It sees disability as being an individual trait or condition of a person that needs to be treated or controlled. A person’s impairment is seen as the primary problem, and quite often the treatment involves training their behaviour in order to adjust as best they can to traditional social norms, and ‘managing their expectations’, so that they don’t lose the run of themselves and expect everyday equality and recognition of the legitimacy of their own lived experiences.

1.1. Language

The Medical Model is encapsulated in the phrase “people with disabilities” (often PWDs), which confuses a person’s having an impairment with their being disabled by designs, policies, systems, and society in general. Disability is treated like a disease, such as AIDS, or herpes, that someone is unfortunate enough to have contracted or been born with, rather than treating disability as a set of social barriers.

It is thus embarrassing, and somewhat unfortunate, that the phrase “people with disabilities” is given such prominence in the UN Convention on the Rights of People with Disabilities. It makes as much sense to say that someone of colour is “with racism” or someone who identifies as LGBTQIA is “with homophobia,” etc. That is to say, just like racism, sexism, homophobia, etc., disability is something that needs to be eliminated, not perpetuated, and even celebrated, as a way of categorizing vast diverse swathes of humanity.

The “International Day of People with Disabilities” is an example of this attempted celebration of disability as an identity. It is a bit like having an International Day for People with Inherent Inequality,” or an “International Day of Second Class Citizens,” where the world is encouraged to think about such unfortunates for a day, and maybe think of ways in which their plight might be in some way lessened on the individual level; or more likely, just think of them, possibly with pity, and be thankful that it isn’t yourself.

1.2. Supercrip

Just as the supposed answers are sometimes reduced to an individual or localized level, In the medical model, the individual disabled person is often singled out and celebrated, especially if they have achieved a goal way beyond what society expects of them.

Such feted heroes almost always are celebrated for having achieved something of zero social consequence, except that they might be a role model ‘especially for the rest of us, who thought we had problems until we see what some others have to put up with’. Such heroes, apart from their standout feats, are supposed to inspire individual optimism, but are strictly mute on the social aspects of the discrimination they face on a daily basis. If anything, they allow themselves to be co-opted by the disability industry.

The “supercrip” depiction feeds its way into media representations, such as film, and perpetuates social stereotypes, but it has a more insidious and subjugating effect for the vast majority of disabled people: it demoralises those who are struggling with daily institutionalised disablism, and implicitly undermines their lived experience – putting the entire problem of coping right back on the individual level. Furthermore, it gives weight to the already loud voice of the elite disabled, while further drowning out the concerns of the vast majority who are not being heard, or not being listened to.

The message is, “if x can do it, why can’t you?! In such a way is disability internalised, and the disabled individual is encouraged to blame themselves for the institutionalised discrimination they face daily.

1.3. Una Voce

Apart from high-achieving exemplars being singled out, disabled people find themselves being segregated into faux communities, all beneath an overarching umbrella of a cumbaya-like pan-disability unity which we are all supposed to aspire to. However, with the possible exception of the Deaf Community, people with particular impairments don’t necessarily share cultural or any other affinities with people with similar impairments, apart from suffering similar types of discrimination at various times in their lives.

Even people with identical impairments, however, may have widely varying practical skills, coping skills, networking supports, etc., so if there is unity in discrimination even on this narrow scale, it is unity in the loosest sense of the word in terms of what might be assumed to be a community based on adversity. People opposed to this false unity are accused of ‘siloing’ and being divisive.

1.4. The Disability Industry

The medical model has traditionally infantilised the disabled person, and has made them dependent on a charity-based disability industry, rather than having the State be made accountable for equal access to services and rights. The medical model makes the representation of the needs and understanding of disabled people the domain of non-disabled specialized “experts,” rather than letting disabled people speak for themselves.

Worse still, this non-disabled representation of the disabled is entirely dominated by the heavy hitters of the privatized, but heavily subsidized, disability industry, i.e., the institutionalized service-providers who necessarily have a “conflict of interest” (according to General Comment 7 of the Convention itself), when claiming to advocate on behalf of disabled people.

The disability industry is one of the few sectors in which such a practice is not only tolerated, but wholly facilitated by the various statutory structures of consultation and funding etc. Some will even co-opt people with impairments onto their boards, or use them as spokespeople, to add to their alibi or imply legitimacy in their advocacy, but if they are a service provider, the conflict of interest is undeniable.

1.5. Lobbying vs. Campaigning

Today, the medical model has a firm hold on all statutory decisions relating to disability in the Republic of Ireland, despite General Comment 7 (September, 2018), requiring this institutionalized stitch-up to be brought to an end. Those organizations with the best resourced representation, and their feet already under the decision-making tables, are primarily service-providers, so it will take a concerted effort to alter this chicken and egg impasse. To extend the metaphor, the established charities will not be the turkeys voting for Christmas. They will need a helping hand to vacate the advocacy space they currently, wrongly, occupy. The traditional charities even brazenly proclaim themselves to be “representative organizations.” A simple way of framing this situation is that service-providers necessarily “lobby,” while DPOs “campaign,” because we have no conflict of interest, and only want the realisation of our basic Human Rights.

1.6. Recap

Neither disability, nor even subgroups of disability, are causes of celebration. Rather, disability needs to be eliminated, not celebrated, and we cannot have equal rights until then. Social barriers need to be removed, and people with impairments accepted and allowed to participate as equals in their wider communities and society. The only means of doing this, according to the CRPD, is to recognize DPOs as being the voice of the disabled, i.e., not service-providers, and not non-disabled-led organizations.

2. The Social Model of Disability

The Social Model of Disability recognizes that people are not born disabled, but rather, they are disabled by negligent design, policies, and decision-making. In other words, an individual may be born with or acquire an impairment, but it is society that creates the disability by allowing, and even actively propagating, barriers that lead to the social exclusion of people with impairments.

Disability is not something we have; disability is something done to us…we are actively being disabled by the ignorance of others, and that alone is what it means to be disabled, i.e., in the same way that someone might be said to be assaulted. As such, we are not “people with disabilities,” in the same way that we don’t speak of there being a category of “people with discrimination.”

2.1. For the Elimination of Disability

So, because disability is primarily caused by society, and not by nature, it is the responsibility of society (from the global to the local), to prevent the disabling of people…to prevent disability. An individual’s impairments may or may not be curable, but disability is a social ill that is totally curable in most cases, even if this means reconfiguring what have been traditionally accepted as indispensable convention or ideal.

2.2. Integration and Universal Design

The Social Model emphasizes the rights of disabled people to have equal access to services and to be able to participate as equals in their societies. Rights, including rights to services, is incompatible with the charity/medical model of service-provision, not least because all services should be accessible on an integrated basis (i.e., as near as is possible to the same time and place for all service-users). So, instead of ghettoing service-provision for disabled people, the concept “universal design” must be utilised to make sure that people who are now disabled, become equal members of society, in practice and in perception.

2.3. Expertise and Lived Experience

The CRPD recognises that the experts in disability are disabled people, themselves, because of their own lived experience. It is for this reason that they, through their DPOs, need to be prioritised in all consultations on policy and design, etc. Denying the priority, or significance, or even validity, of lived experience by not recognising it as the expert voice for which it is, adds insult to injury, is dehumanising, and can be humiliating.

The social model of disability realises that the voice of the most marginalised and disabled is fundamental to the concept of universal design. Even the 99% does not have the right to deny the legitimacy and rights of the 1%.

3. Disabled Persons Organizations (a.k.a. Disabled Peoples Organizations)

In the Social Model, the primary experts in disability are those who are disabled, and they need to be prioritized in the formulation of Universal Design and any policies or decisions relating to disabled people – i.e., everything. To make things manageable, the UN Convention wisely lays down the notion of disabled people being represented through their “representative organizations,” which are run by disabled people, are primarily membered by disabled people, and which are not service-providers. The Social Model approach refers to these representative groups as Disabled Peoples Organizations (DPOs).

As noted above, the Convention on the Rights of People with Disabilities erroneously uses the Medical Model notions of disability being owned by the individual, rather than by the State or society. Similarly, what we know as DPOs, are referred to in General Comment 7 of the Convention as “organizations of people with disabilities,” and are distinguished from what we call non-DPOs (i.e., “organizations for people with disabilities” (General Comment 7.13).

4. Ongoing Impacts of Historical Legacy

In Ireland, there is a strong tradition and legacy of the service-providing charities being seen as the experts in disability management etc., and with their very strong brand-names, they are often the go-to people for the State and all other types of organization, to find out anything about particular impairments or the disability norms in general.

Such service-providers cannot be, nor can they ever be, DPOs, by virtue of the intrinsic conflict of interests mentioned in General Comment 7 when it comes to service-provision and advocacy. Currently, also, the service-providers are led by non-disabled people, and are run (i.e., on boards) by mostly non-disabled people. Any confusion of the notion of “DPO” necessarily further disadvantages the real DPOs, and allows the non-DPOs to continue to imply, if not to claim outright, that they are also DPOs.

The distinction of DPO from non-DPO is at the very core of the Convention on the Rights of People with Disabilities (notwithstanding its Medical Model language). All other Articles are necessarily predicated on Article 4.3, since without consultation with the experts (DPOs) from the outset, no State can remotely understand what is meant by the rest of the document.

5. Simple Summary of Differences between DPOs and non DPOs:

5.1. “Of” versus “for”

DPOs are organizations “of” disabled people (i.e., membership, perspective etc.), whereas non-DPOs purport to be “for” disabled people (or “people with disabilities,” as they usually prefer to call us). This distinction between “of” and “for” is made in General Comment 7 of the UN Convention (General Comment 7.13).

5.2. Representative Function

because a DPO cannot be a service-provider, the primary, if not the sole, function of a DPO is the representation of its members in explaining their needs, wishes, and rights to any or all relevant bodies (including statutory bodies, other civil society organizations, and commercial enterprises).

5.3. Members vs. Clients/Service-Users

Membership vs. clients/service-users: DPOs have members, non-DPOs (i.e., service-providers), have mainly clients and service users. The nearest thing thy have to members are the trustees on their board (i.e., board-members). A DPO is comprised of its members, and these members make up the vast majority of personnel with anything to do with the organization. At least an overwhelming majority of those members need to be disabled for the organization to be a DPO. In contrast to a non-DPO, if a DPO has a board, that board is accountable to the wider membership, whereas, by definition, a non-DPO has no other members to be accountable to (if indeed it is accepted that trustee and member mean the same thing).

5.4. Leadership

Disabled-run and Disabled Led: A DPO has to be led and run by disabled people.

5.5. Rights vs. Charity Perspective

DPOs are likely to recognize the reality of the Social Model of disability, and reject the medical model. Therefore, there is a high probability that a DPO is necessarily rights-based, rather than accepting a charity model of service-provision.

5.6. The Language of Disability – “disabled people” versus “people with disabilities”

The recognition of the Social Model means that DPOs are likely to prefer the term “disabled people,” in recognition that we are disabled by society rather than our impairments. Hence, we call ourselves Disabled Peoples Organizations (DPOs). Non-DPOs belie their dependence on the Medical Model by the use of the term “people with disabilities.”

5.7. Language: “Campaigning” versus “Lobbying”

Because a DPO is not a service-provider, and as such has no conflict of interests in advocacy, a DPO “campaigns” decision-makers. By contrast, a non-DPO (usually a service-provider), necessarily has a conflict of interests in advocacy, and therefore “lobbies” decision-makers.

5.8. “Disability Sector”

In keeping with the language of an industry, non-DPOs tend to use the term “disability sector,” in recognition that there is a living to be made from the misfortune of the discrimination against others. Just as it would be offensive to speak of a “racist sector,” a “sexist sector,” or a homophobic sector,” it is equally offensive to speak of a “disability sector;” but that offence is surpassed by deference to the sector when it comes to prioritisation in consultations.