The United Nations (UN) drafted the ‘Convention on the Rights of Persons with Disabilities’ in 2006. Five years on we examine disability equality around the world to see if it looks any different.
If I were God, (any of them: you choose) looking down on the Earth today, what would I see? I’d see lots of different states, cultures, tribes, communities and groups living differently in different parts of the world. Even as God, I’d find it difficult to make sure that all of the tiny little dots – like you and I, lived together nicely treating each other fairly and empathetically. My options would appear to be surprisingly limited: send a flood, strike a few high profile people down with lightning or leave people to sort it out for themselves.
And so God created the UN. Well, that’s not strictly accurate, men and women of good will and intent created the UN to be more like God; as a way to run this fractured world of ours. The men and women of the UN aren’t perfect – because they aren’t God, but they do have a strong resolve to see violence replaced with peace, hunger replaced with contentedness and prejudice replaced by inclusion.
Respect and fairness
These ideals inform many of the roles and conventions of the UN. The convention I’d like to focus on for a few moments is the ‘International Convention on the Rights of Persons with Disabilities’. This is an expression of the UN’s efforts to make sure that disabled people are treated with the respect and fairness that all citizens of the world deserve.
The convention sets out what each Member State’s responsibilities are to disabled people. Even at 10,000 words in length, the document is succinct given its import. It feels as if the objective is for it to be as watertight as possible, using the ‘fewer words mean fewer possible interpretations’ model. Despite this, it efficiency espouses on subjects ranging from accessibility, right to life, access to justice and independent living.
For such a plan to exist at all there needs to be a starting point. For the UN to talk about disabled people, they need to agree on what a disabled person actually is. The problems with this are very neatly solved at the outset. A disability could clearly be any type of impairment with mental, sensory, intellectual or physical implications. It isn’t an exaggeration to say then, that every single (disabled) person across the globe lives with a unique set of circumstances. To this end, the UN’s definition of disability is: “an evolving concept and that disability results from the interaction between persons with impairments and attitudinal and environmental barriers that hinders their full and effective participation in society on an equal basis with others”. In other words our environment hugely influences how effectively people are able to operate. Executive Director for Adaptive Environments at the Institute for Human-Centred Design, Valerie Fletcher explains the value of the statement and how ‘future-proof’ it is saying: “That notion of a contextual basis of disability is so significant; the thing that we can control; how we design the context is such a brilliant opportunity.”
Taming the environment
Environmental influences can of course, be tamed to incorporate inclusion. It’s a question of the attitude behind the people responsible for the efficiency of those environments (homes, workplaces, hospitals, airports etc, etc).
The beautiful part of this statement is that it prevents any unnecessary disputes, even across different cultures, over who is disabled and who isn’t, as well as leaving as little margin for misinterpretation as possible. This will become increasingly important as the world becomes ever more dominated by a new order – digital. The statement needs to refer to the whole world as we use it. Axel Leblois of G3ict, the Global Initiative for Inclusive Information and Communication Technologies campaigns for universal accessibility to the digital environment and told me about what his recent trip to Africa had shown him. “We met a number of disabled people in Uganda and Mali. Access to IT is crucial. Take the case of a young man we met who is unable to move around outside of his home because his wheelchair can’t roll on the unpaved street he lives on. He’s at home but he has a computer and an internet connection – it’s changed his life completely.”
The UN has a huge responsibility to guide member states towards a positive framework of universal design and social inclusion. The importance of a global standard cannot be over-estimated. Each member state needs to understand that disabled people have rights, not just as disabled people, but as ‘people’ – full stop. Most UN Member States are on the same page but may not have reached the same line. Executive Director of the Inter-American Institute on Disability & Inclusive Development, Rosangela Berman Bieler explains: “If they ratify the convention they commit with what’s there and the way we’ll deal with it. Of course, many developing countries will ratify the convention expecting to receive funding to deal with disabilities within a very charitable model.” Even though the Convention aims for independence rather than charity Bieler hopes that it’s a move towards a new perspective adding that the convention should be used as an “advocacy instrument”.
Embracing inclusion
Inclusion appears to be an idea that lots of member states have not only grasped but embraced. Certainly in the USA and Western Europe there are requirements, standards and laws that directly relate to disability equality. Saying that, even in our so called progressive democracies things aren’t always as they should be. There seems to be a persistent culture that says ‘adapt’ rather than ‘include’. Architects are a supposed clever bunch but even now there are buildings on drawing boards that will feature beautiful sweeping steps that will one day have to be marred (probably by law) with a stair lift. Why not simply build a beautiful sweeping ramp to start with? Valerie Fletcher is continuing to lobby for a more universal approach saying: “We certainly believe that every design school in the world should be teaching inclusive design. It is irresponsible to do otherwise”. The idea is so simple that to ignore it is to be practically negligent.
The definitions and requirements are very forward thinking indeed; as is the very nature of the UN itself. ‘One nation under God’ is tricky; ‘One world under God’ is very tricky. A disabled person should not only receive equal rights in their home state but in any state. The world is their home. Ideally every member state would provide its entire people with equal access to education, employment and the right to live the life they please. I’m constantly surrounded by non-dreamers who tell me that it’s impossible but we have already come a long way. Executive Director of the Society for Child Development, Dr Madhumita Puri has been working for 25 years in developing innovative approaches for inclusion, with particular emphasis on intellectually disabled people. Although she is only too aware of the scale of the task, she points out that the convention has really helped to focus and provide resolve to Member States. Speaking of India, she says: “A decade ago nobody was addressing the issue of gainful employment and people were only looking at keeping disabled people ‘busy’ but now there are 50-60 organisations across the country that are actually addressing the issue of employment.”
Indeed, it’s incredibly simple for a white, middle class male with misty eyes like me to have dreams. I can only guess at how ambitious, perhaps ridiculous these words sound to a disabled person that grew up in an Eastern European orphanage or an isolated African village. Perhaps they’d say that the notion of ‘equality’ is premature. Surely, survival must come first. This is the only rational explanation behind one of the statistics put forward by the UN Development Program, stating that: “80% of persons with disabilities live in developing countries.”
Whose problem?
Far from meaning that disability is a more or less a purely second world issue, what it actually means is that mortality is still agonisingly high for disabled people in the third world; therefore they are not found in good numbers in the world’s poorest regions. Although the first world has a higher ratio of disabled people (because we recognise more variants of disability and disabled people tend to live longer in these regions), we are a much smaller portion of the world’s population numerically.
Certainly Axel Leblois’ findings support this conclusion. A good example is related by his observations on the provision of assistive technologies for higher education: “Many countries have programs in place. In fact, 78% of the ratifying countries – which is a very high percentage, are accommodating their needs in terms of access to programs and being able to study and interact with computers. But, we find that there are some significant distortions – especially as it relates to income per capita of a country. In well off countries it’s over 80% but in less developed countries it’ll be around 25%.”
From this simple analysis, we need to establish how and why disabled people are able to live, work and thrive in the first world and not in the second and third. We need a good grasp of the model before we can start to replicate it. Again, this is a founding principle of the Convention and the root of its importance to every citizen in every Member State. The barriers are obvious and unsurprising: politics, conflict, natural disaster and cost.
Further contradictions
The deeper the scratch on the surface becomes, the more contradictions I find. Valerie Fletcher reminds me of the dangers of making bold assertions saying: “I find myself more and more focused on the economic argument. The reason for that is that as numbers (of disabled people) increase here in the United States, I’m ashamed to say that 21 years ago after the passage of the ADA (Americans with Disabilities Act) we have a lower employment rate today than we had in 1990 for people with disabilities.”
Is money truly the root of all evil? It is certainly very often found adjacent to prejudice. In the case of disabled people, much of the prejudice is literal: some cultures pre-judge all disabled people as being unemployable in any effective manner and expensive to medicate or service. The challenge for the UN is not to discipline but to guide member states into seeing possibilities for disabled people, allowing them opportunity to achieve (and change the perceptions of others). The good news is that one solution will fix many of these separate problem areas. Unfortunately, the solution I refer to is a wholesale change in attitude, a very difficult thing to achieve over an entire nation’s culture let alone the world. Dr Puri attempts to demonstrate the possibilities, again speaking about her home state, one that is sometimes criticised for outdated attitudes towards social mobility saying: “Even since India signed we’ve had a slow start and then the message started to sink in and people started to make noises. That began to influence the political mindset because there was certain accountability not only internally but also internationally.”
Let’s be positive though: If the UN can start to show how ingenuity in accessible architecture or labour markets etc means that disabled people can be helped to help themselves, the domino effect will be dramatic in terms of resolving attitudes to education, justice and real equality. We could move surprisingly quickly to a time when an environmental definition of disability means that the term ‘disabled’ becomes extremely rare. Axel Leblois illustrates the simplicity of the idea at its most basic level saying: “The cost difference of an accessible ATM from a non-accessible ATM is marginal.” There does seem little point in being pedantic. It’s more a case of sharing best practice amongst Member States as Valerie Fletcher neatly summarises, saying: “I really want people to get excited about this because I want to communicate that we are not looking for slavish adherence to the rules but to engage creative designers in recognising that design for people is just as demanding and compelling and satisfying as any other driver for your creativity. It’s not a ‘tell me what I have to do’. That’s not workable.”
Cultural differences
What stands in our way is the very fibre of the UN itself. Bringing together different cultural, social and religious outlooks is a huge challenge. An example of the depth of the challenge is that there are religions in the world that would have their followers believe that reincarnation is a very real feature of the life and death cycle. With this in mind, followers might well wish to ‘come back’ as a millionaire rather than a disabled beggar. Is this reward and punishment? Other cultural and religious proposals always sound absurd next to the one we choose for ourselves, and in this case will appear sinister to Christians and Atheists for example. The fact is, that as I mentioned before, the UN is not God and has no jurisdiction to involve itself with the workings of a nations’ theocratic paradox. The UN can only reward outcomes and it can’t be seen to be offering to buy member states’ souls. Dr Puri insists that although it isn’t the dead-end some might suspect, it will take time as all cultural shifts do, saying: “People are beginning to speak the language but it hasn’t got in to the mechanism. The mechanism is still one of ‘charity’”. Rosangela Berman Bieler, coincidentally uses a similar metaphor regarding her views on how the convention is generally received: “today you have different cultures discussing what reasonable accommodations means, and trying to come up with their own understanding of the definitions that are in the Convention, and it helps us all speak a similar language” adding “I’m very pleased with the results, I think it’s going faster than other conventions and, again, you don’t change culture in 10 years, or 20, so I think that we’re all in the process of strengthening the concepts”. As I write of course, there are member states that have not ratified the convention even though it’s been well received by most.
The UK is an interesting case study. Sure, we’ve got disability rights legislation on our statute books and many and various schemes that enable disabled people to fulfil their potential and lead a full life. All of this sends a powerful message from government that they are serious about equality and yet as I’ve alluded to, disabled people are still largely invisible. They are the most overlooked minority in the country despite making up around 20% of the population. Even when they make it into the limelight we patronise them. We call their sporting prowess ‘inspirational’ instead of just plain ‘brilliant’, we stare at television documentaries with pseudo freak -show titles: ‘Embarrassing Bodies’ and ‘Body Shock’ and so on. Yes, we’ll be the first country ever to run an Olympic and Paralympics Games where the two tournaments are legally integrated but did we miss an opportunity to bring the Paralympics fully under the same Olympic banner instead of having a two week gap between the events? We’ve all got a long way to go.
Influencing Member States
What can the UN actually do to influence member states? Answering another question before it’s asked; it is not going to declare war or throw any member state out for not ratifying the convention. It is a truism that more flies are trapped with honey than vinegar, so the model has to be incentive and reward based. Of the member states that have already ratified the convention some at least will have done so for alterior motives as Berman Bieler suggests, perhaps in some cases to secure funding. The hope is that such funding is used effectively to help disabled people in that particular state. It may not be as pure as we’d feel comfortable with but the end does sometimes justify the means.
Priorities will also always be in a state of flux. Politics, economics as well as disasters and wars will play a large part in how much notice the Convention and disabled people receive. Again, we could look at the UK and talk about service cuts and benefit reform. Would there have been a hunger for this if we weren’t battling a recession, paying off a defecit and holding our breath about the Eurozone?
Despite the fact that we need a convention of this sort at all, I’m certainly glad to report that it drew the highest number of signatories in history to a UN convention on its first day. This must prove that there is an overwhelming willingness amongst people to move the rights of disabled people forward into a brighter age.
Economic sense
Perhaps that brighter age is getting closer. New technologies are being invented and developed that feature new and improved accessible features. The tide has turned from complexity to simplicity, not only in terms of the actual ‘handset’ or ‘unit’ but also the software. Best of all it pays manufacturers to play along as Axel Leblois points out: “The Microsoft survey conducted in 2003 shows that 57% of the adults in the USA use accessible features on their TV, which is a huge number. Accessible websites with pictures properly marked with appropriate assistive features have a propensity to attract 25% better hit rates from searches. So if you do a website that is not accessible, well OK, but you are losing a lot of potential users. You ask how much does it cost. – I’m telling you how it benefits you.”
The convention is down on paper in black and white. It’s a rigorously composed document with little scope for machination. As I mentioned; the bottom line is that each Member State needs to understand (and act on) the fact that disabled people are ‘people’ – full stop with all the rights and privileges that the title carries. The incentives are all in place too, it makes economic sense with inclusion really the only sustainable way to proceed. The end game should be to lose disabled signs from our public places or compromised adaptations and for nobody therefore to have to be defined as disabled simply because of the (environment) world we live in.
More: www.un.org/disabilities/