The lack of data on people with disabilities is severely constraining the ability of the international community to monitor the situation of children, youths and adults with disabilities. There has been insufficient attention to the need to collect data on disabilities and link them to education outcomes, and even when collected, the scale of disabilities is often un-reported. (Introduction to UNESCO report, 2015*)

There are some misconceptions and vague notions about what Education, and education research, is. It appears that Education, to some, is a valid topic in itself but its links to Independent Living are non-existent or barely visible. So when I was asked what Independent Living had to do with Education, I wrote a lengthy reply to the enquirer. The importance of Education in the context of Independent Living is such that I thought an edited version might serve as a blog post for more readers.

While Education is important in and of itself, in the discourse of independent living and citizenship, education is the key to the labour market. Equally importantly, it is also the key to speaking up and making a case for citizenship for those who have fallen by the wayside.

Education has a far reaching scope, historical significance and political role in the formation of nation states. Education is and has always been the beating heart of every society through humanity’s development. More often than not, Education has served to exclude certain groups in society while bestowing superior rights upon others. Education has created power hegemonies. Education has silenced and destroyed knowledge when the ruling elites decided that such knowledge would only serve to disrupt the political and social order but Education has also been the tool for social and political change, as Paulo Freire illustrated elegantly in his work.

While formal education serves to provide the citizens of an uncertain future with yesterday’s tools, ideas, politics and ideologies, informal learning is always taking place, and is paramount to people’s wellbeing and the concept of voice. It is only when people gain formal merits that the concept of voice becomes a reality but how does one obtain formal merits when desperately sick, and disabled by chronic disease?

There are no structures to help and support sick children, young people and adults to an education, let alone ‘become’ someone. Unlike in the case of learning disability, and I’m glad to say I know many decent SEN educators and dedicated, passionate professionals in that sector, our human rights are effectively breached in systems that are obsessed with outcomes and where schools are frantic about losing their ranking. Ideologies and sometimes rather bizarre learning ‘theories’ abound as to what makes schools successful. This has led to rampant ableism inside the education system towards sick and disabled pupils, students, lecturers and scientists. This is a huge problem that ties into and exacerbates the problematic of access, accommodation and genuine participation. Physical presence in schools is like a new religion, absence sheets are considered as absolute truths, wholly unscientific causative claims are made upon students’ absence and their success rates. Where do such regimes leave those who are home- and bedbound? They are constructed as inferior from the outset and it is up to each and every family to negotiate with schools how their sick children may gain access to education. Sometimes successful compromises are reached, sometimes schools refuse to teach sick children. Often it is insinuated that families and their sick children do not try hard enough and that somehow, their disabilities are imagined, so accommodation (or access) are refused on questionable (or even unlawful) grounds.

Independent Living and Education, especially in the discourse of Lifelong Learning as defined by the UN and UNESCO, are intertwined. Independent living hinges on people receiving adequate healthcare and education, enabling them to become full members of society. Instead, what is increasingly on offer are ineffective treatments including CBT and adaptive therapies, offered as corrective (not even rehabilitative, which would be bad enough in the case of incurable disease) measures because sickness is construed as a moral deficiency. How are we to express all that without educating ourselves, others and each other?

Another problem is that without an education people have no voice, no power to at least demand to be listened to, especially when they are unprotected by a prestigious or at least respected employer. The UK’s class system is very much alive, an example of which would be BBC interviews with benefit claimants. The questions drip with snobbery and condescension, people are portrayed as scroungers not only because they fall outside the perceived norm of work and health but because they then fail to express themselves in an educated fashion. They are constructed as helpless, hapless, friendless and ignorant. The fact that they may not have a good education cynically strips them even of their subjective knowledge about their health and lives, about their needs, rights and ability to take action.

Lived experience as a sick person, I would argue, has everything to do with formal and informal education. The inability of the sick and disabled to be educated or even educate themselves puts them at the mercy of uninformed members of the medical profession, family members and friends and the wider public.

Education is also key towards developing  a common voice with which to claim a rightful place in society as citizens. Alas, the formats the sick and disabled have at their disposal hold promise but are also detrimental. Lack of in-depth discussions constitutes one of many problems. Sharing knowledge can be a demoralising task and being analytical or perceived as too critical will incite anger and sometimes trolling or worse on social media. It is difficult to come together when physical presence is denied to many of the sick and disabled, and online formats are sometimes the only means of ‘getting together’.

Education is and always has been deeply political. It is a tool with which to exercise power, it is a means to form future citizens and it serves to stratify societies, all societies. It is time we asked ourselves the meaning of exclusion from the education system for those who are too sick and disabled to attend within the perceived norms. We also need to ask ourselves what type of citizenship is on offer for those who cannot obtain an education when it is so vital to independent living (https://uttingwolffspouts.com/science-languages/).

The right to education has been internationally recognized as an overarching right: it is a human right in itself and is indispensable for the exercise of other human rights. A number of international standard-setting instruments protect the fundamental human right to education. (UNESCO, 2015*, p. 5)

Article 24 – Education 1. States Parties recognize the right of persons with disabilities to education. With a view to realizing this right without discrimination and on the basis of equal opportunity, States Parties shall ensure an inclusive education system at all levels and life long learning directed to: a. The full development of human potential and sense of dignity and self-worth, and the strengthening of respect for human rights, fundamental freedoms and human diversity; b. The development by persons with disabilities of their personality, talents and creativity, as well as their mental and physical abilities, to their fullest potential; c. Enabling persons with disabilities to participate effectively in a free society. (UNESCO, 2015, p. 8)

Claudia Gillberg for Utting Wolff Spouts

Reference

Click to access 232592E.pdf

Recommended reading

Dewey, John, Democracy and Education (any edition or year of publication)

Freire, Paulo, Pedagogy of the Oppressed (any edition or year of publication)

Stanford Encyclopedia of Philosophy. On Jane Addams. http://plato.stanford.edu/entries/addams-jane/ (downloaded 4th June 2016)