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.
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 categorising 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.
Just as the supposed answers are sometimes reduced to an individual or localised 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 specialised “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 privatised, but heavily subsidised, disability industry, i.e., the institutionalised 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 institutionalised stitch-up to be brought to an end. Those organisations 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 organisations.” 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.
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 recognise DPOs as being the voice of the disabled, i.e., not service-providers, and not non-disabled-led organisations.
2. The Social Model of Disability
The Social Model of Disability recognises 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 emphasises 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 Organisations (a.k.a. Disabled Peoples Organisations)
In the Social Model, the primary experts in disability are those who are disabled, and they need to be prioritised 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 organisations,” 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 Organisations (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 “organisations of people with disabilities,” and are distinguished from what we call non-DPOs (i.e., “organisations 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 organisation, 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 organisations “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 organisations, 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 they 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 organisation. At least an overwhelming majority of those members need to be disabled for the organisation 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).
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 recognise 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 Organisations (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.