In this blogpost I will discuss social locations and how social locations effect our experiences in the world. The focus will be on the set of social locations at the intersection of intellectual disability, being non-verbal, and coming from a family from a disadvantaged background. Social locations can be thought of as a map with intersecting points which result in the relative advantages and disadvantages, we experience as we negotiate our world. The interactions between our various social locations and how these interactions shape our life best understood in the context of intersectionality. Olena Hankivsky defines Intersectionality as follows:

“Intersectionality promotes an understanding of human beings as shaped by the interaction of different social locations (e.g., ‘race’/ethnicity, indigeneity, gender, class, sexuality, geography, age, disability/ability, migration, status, religion). These interactions occur within a context of connected systems and structures of power (Laws, Policies, state governments and other political and economic unions, religious institutions, media). Through such processes, interdependent forms of privilege and oppression shaped by colonialism, imperialism, racism, homophobia, ableism and patriarchy are created” (Hankivsky: Intersectionality 101. p.2)

 There are an incredible number of intersecting levels of disadvantage which can be experienced by a non-verbal person with an intellectual disability. I this blogpost I will explore the unique nature of these disadvantages in comparison to other disadvantaged groups. The primary focus will be on the nature of these disadvantages and techniques which can be used to overcome the disadvantages. A key focus will be on the notion of recognition and how recognition plays a large role in any distribution of funds. I will discuss current techniques which are being used which help advocate for and increase recognition for people with an intellectual disability and argues that this increase in recognition will increase the likelihood of fair distributions of funds, and that this fairer distribution will result intersectional disadvantages becoming less severe.

                   Intersecting Sets: Intersectionality and Intellectual disability

             Having a disability of any kind can result in disadvantages in accessing various aspects of society. Having an intellectual disability can result in further disadvantages; because this can result in a person having a diminished capacity to articulate and justify ones wants and needs. A non-verbal person with an intellectual disability has even further disadvantages because they cannot even articulate their needs and are reliant on others to advocate for them in society. Or at the very least are reliant on the society they are living in valuing them and hence funding research and distribution of augmentative communication devices. So, in this situation you have interconnected sets of potential disadvantages {Disability {Intellectual Disability {Non-Verbal}}}.

            A person in this state of affairs is reliant on a combination of legislation e.g., Assisted Decision Making Act, Advocacy from Family members, and state sponsored agencies such as Tusla. But there are further lairs of disadvantage that can affect a person. A non-verbal person with an intellectual disability who is put into care because their family can no longer look after him is in an even more precarious situation. In some situations, people with an intellectual disability are put in care because their parents may not have the financial resources or educational capacity to adequately care for them.

            In this situation you have a person who with a {disability {Intellectual Disability { non-verbal { working class { advocates who are unclear about structural entitlements. }}}}}. These interconnected sets of disadvantages impinge on and interact with each other. Having an intellectual disability and being non-verbal impinges dramatically on one’s ability to advocate for oneself, but if your primary advocates have poor educational and financial resources then this can lead to greater difficulties for to achieving what you want.

            The person in this situation is doubly disadvantaged. If a person is disabled, say is in a wheelchair, and lives in a society which has limited wheelchair access, they can conceptualize the difficulty and join advocacy groups, to push for change. Similar situations apply to a person of colour conceptualising and fighting racism and white privilege. Or a Gay person living in a society which is homophobic. But our non-verbal person with an intellectual disability is not in the same situation. It would be extremely difficult to explain to this person that his parents are disadvantaged and would lack the conceptual resources to advocate on his behalf in the area. Furthermore, it would be difficult to explain to him the nature of these resources, the economic factors, and legal factors that go into decisions of this nature. In this country it is policy that providers should explain these factors to service users under their care; and this is typically catered for by Speech and Language Therapists designing easy to read tools that carers can use to try and help the service users understand their rights. However, these easy read tools dramatically underestimate the difficulty of explaining abstract concepts in a non-verbal manner using pictures (Wittgenstein 1951).

            People with an intellectual disability typically have their resources controlled by outside forces (Watchman 2018). Not even knowing what factors are impinging on your wellbeing, not knowing whether you are being given a fair distribution of goods for your daily living etc. In this situation a person could be oppressed without having any conception that they are being oppressed. Their family acting as advocates may not have a full conception of the nature of such oppression. Leaving the vulnerable non-verbal person acting in a world around him with no conception of the nature of this world and his entitlements.

            There are some factors which can be useful to help people in this situation. In put from Speech and Language to help improve functional communication, augmentative communication techniques such as Lamh, PECS, Objects of Reference etc. Can give people some capacity to represent themselves and their interests. But these linguistic tools are more useful for people with practical engagement with one’s environment and aren’t tools of sufficient grammatical or conceptual power to understand and argue for ones ‘rights’, ‘obligations’ etc.

            In such cases it will fall to employees working in an organisation to advocate on behalf of the service users living in their homes. This advocacy will be constrained by legal regulations provided by external organisations such as Hiqa. Staff will have to ensure that various regulations are met such as prudent person-centred finances, regular service user meetings, and keyworker meetings, staff training is sufficient to provide care for the service users etc. Once these regulations are in place and Hiqa pass the house on their twice a year inspection then it is generally accepted that the service users have been sufficiently advocated for.

            However, we see in our daily lives that despite laws in relation to racism, sexism etc. inequality still occurs in relation to how people are treated in their daily lives. Is it not likely that similar things could happen to service users whose houses are passed by Hiqa as sufficiently well regulated? Are there inequalities between service users within an organisation who come from affluent families who are educated and who know how to use the system to achieve the best outcomes for their child, and service users whose families are poor and uneducated. It isn’t implausible that organisations will prioritise the needs of service users whose families have the capacity and the knowledge to bring litigation against the organisation and those who do not. It is possible for an organisation to meet the minimal regulatory needs of a service user but for the distribution between service users to be unequal.

            If this did indeed occur, it would be an unjust situation. You would have two sets of service users with a similar demographic: intellectual disability, non-verbal, etc. But one group would have more advantages because of the economic and political profile of their family. This would be an unjust situation and a situation the service user would be unaware of and even if they were aware they would not have the conceptual resources to fight it.

            Now a possible avenue would be for the employees within individual houses to fight the disparity. But in this situation, one would be in a state of affairs where staff or middle management would be required to make accusations of injustice against senior management and the service provider. This could be potentially a dangerous situation for staff to be in and it is not a reliable system to expect justice to arrive from staff fighting systems of power in the organisations the work in.

            We can see a three-pronged approach to try and advocate for service users who cannot advocate for themselves; (1) ensure that the service user needs are met in a person-centred manner according to policies set by Hiqa, (2) Ensuring that service users goods are distributed to all service users in the service in an equitable manner.  This involves ensuring that one group do not benefit in a manner that is disproportionate to the benefits given to the other group. (3) Ensure that service user rights are met in the same way as members of the general public’s rights are met.

            A danger in activism is that we sometimes end up erasing the people who are being advocated for. Thus, when it comes to an area such as gay rights, we want gay people at the centre of the conversation speaking about their experiences and how they feel society treats them. While CIS het people can be allies in this process, we do not want them at the centre of the process leading the way on a subject matter which they have no direct experience of. Yet in the case of non-verbal people with an intellectual disability it would appear to be the advocates who are centre stage not the people being advocated for.

The language of person-centredness is important and when adopting this philosophy, one is taking a first steps towards putting the non-verbal person with an intellectual disability at the centre of the conversation. But when it comes to more abstract concepts such as parity of economic distribution; or an issue such as having the right to go for a walk in a beech more to 5 Kilometres away from your home versus the responsibility to not spread an infectious disease during a pandemic; issues become more complex. Despite the use of things like storyboards, PECS, easy to read pamphlets on human rights etc. It is extremely difficult to try and explicate these concepts to a non-verbal person with an intellectual disability.

However, despite the difficulties we must continue to try and put in place techniques which can help the service users advocate on their own behalf. Philosopher Nancy Fraizer has noted that as a matter of empirical fact redistribution and recognition go hand in hand (Fraser, N. 2001 p.87). Service user councils are a tool which can work to give service users a voice in the shaping the role of the organisation which they live in. As I mentioned earlier it is difficult for non-verbal people to express their wishes in these councils but with augmentative communication devices it is not impossible. Furthermore, they can partake in voting for representatives and the representative will at least be a person with an intellectual disability who has direct experience of being a service user in a particular organisation. Having representatives within these organisations is a way of increasing recognition of the people with an intellectual disability. With recognition that service users can advocate on their own behalf arguments for fairer redistribution become more likely.

While having representation which leads to recognition within the organisation is important to increase recognition within the wider community. Policies in Ireland such as the new directions policy with its foundation of person-centeredness informing policies in relation to community inclusion, a right to formal education and training, right to vocational training, right to meaningful social roles etc. Are important tools in helping people with an intellectual disability access their own community and operate as valued members of society.

With being in the community whether working in a job or studying; the person with an intellectual disability becomes a recognised member of his own community. Prior to de-congregation service users were hidden away from the general public and this resulted in a state of affairs where they were not given recognition as members of our community. And as Fraizer noted when there is no recognition there will be no major push for redistribution of funds to increase the service user’s quality of life.

However, with the person-centred push to get people out into the community things are much different. The general public see on a daily basis the value people with an intellectual disability whether verbal or non-verbal can provide for the community and with this recognition it becomes an easier job to advocate for increasing funding for various different services located within the wider community.

                                   Conclusion

I have here explored people who are non-verbal and have an intellectual disability and discussed their situation from the point of view of intersectionality. The blog detailed the nested threads of disadvantage that can occur when a person is disabled, has an intellectual disability, is non-verbal and comes from a family with a disadvantaged socio-economic background. Techniques which could be used to help people in this scenario were discussed, including legislation, external auditors, advocates etc. Though despite these techniques the author argued that there is still a possibility inequal distribution of finances. To minimize the likelihood of this happening I argued using the work of philosopher Nancy Frazer that increased recognition will lead to a greater likelihood fairer distribution of funds. An outlined some concepts that serve to increase recognition for non-verbal people with an intellectual disability such as community inclusion, service user councils etc.

                                Bibliography

Fraser, N. (2001) ‘Recognition Without Ethics?’ Theory Culture and Society. 18 (2-3) 21-42

Olena, H. (2014) Intersectionality 101. The Institute for Intersectionality Research and Policy, SFU.

Watchman, K. (2018) “The Intersectionality of Intellectual disability and ageing.” Ageing, Diversity and Equality: Social Justice Perspectives. Routledge.

Wittgenstein, L. (1951) The Philosophical Investigations. Routledge.