Accessibility as a human right #AccessibleAccessibility

Introduction

In 1917, just over a hundred years ago, women were not allowed to vote in elections almost anywhere in the world. It seems almost inconceivable today that some people were deprived of the basic human right to have their say in how their country was run purely because of their gender such a short time ago.

Thankfully, many things have improved since then and access to basic human rights have steadily improved. But in one area there is still a huge amount to be done to ensure that all members of society have basic human rights – the need for accessibility to all aspects of life and society for all, particularly those with unseen disabilities and differences like autism, especially non-verbal autism.

Accessibility today

Let’s start by giving credit where it is due. Not very long ago, disabled parking spaces were rare, access ramps were almost unknown, and the solution offered to many wheelchair users was to be carried upstairs or not to go in at all.

While wheelchair access is now much more widely available, there are still many places where it is difficult or impossible. Other physical disabilities are also better catered for than was the case quite recently, with loop systems for hearing aids in public buildings and subtitles on films and TV widely available, for example.

Perhaps one of the reasons that progress has been made in these areas is because the problems are often very visible and clear to see, as well as legislation being passed in many places requiring wheelchair access in new public buildings and so on. Nobody wants to be seen as operating a building or facility where wheelchair users have to wait outside because there is no provision for them – it is embarrassing and very bad for their reputation. When the great wheelchair athlete Dame Tanni Grey-Thompson came third in the BBC sports personality of the year in 2000, there waswidespread outrage that the set had been designed with a step so she was unable to get onto the stage to receive her award.

Disabilities and differences, particularly those that can be seen, are better catered for then ever before, but there is still much to do.

Gaps still remain

The needs of some groups lag way behind others. Those with differences that cannot be seen can still find basic aspects of life a huge struggle because the basic adaptations and allowances they need are either not made or not even possible due to other factors, such as broader design principles adopted. There are large groups of people still denied proper access to education, employment, cultural venues, shops and other public places.

Autistic and other neurodivergent people with sensory issues, particularly those who are non-verbal, are rarely properly catered for except in specialist locations such as schools for autistic children. As their issues are almost always invisible, they are much less understood and recognised and much more likely to be ignored. There is also a massive lack of education about the existence, prevalence and needs of these conditions.

Even when tools are available to make basic life more accessible for non-verbal autistic people, these can come at a significant cost. When Lee Ridley, known as Lost Voice Guy, won Britain’s Got Talent using an Augmentative and Alternative Communication (AAC) device, the app he used to communicate (not counting the cost of the hardware to run it on) cost £249.99. Is it really right to put a premium price like this on the ability to communicate with others and play a role in society that most others take for granted?

The Social Model of Disability

It is time to look at disability in a different way. The Social Model of Disability, which was developed by disabled people themselves, is based on the perspective that people with differences are disabled by lack of provision for their needs rather than by these differences in themselves.

For example, say you are trying to look over a high, solid fence but cannot see because it is taller than you. You could say that the problem is that you are not tall enough, but the social model of disability would say that if you need to see over the fence, the problem is not your height but that the fence should either be lower, or something should be provided for you to stand on to see over the fence. Ideally, the fence would be of a transparent construction so that everyone can see through it regardless of their height.

To apply this analogy to the needs of non-verbal autistic people, at present they are being offered a box to stand on to look over the fence in the form of AAC or an autism app, but the box is very expensive and not all who need it can afford one. That surely cannot be right in a society committed to diversity and inclusion.

To take this a step further, when everyone can see through the fence it may be that it is one of those that could not see over the old, solid fence that sees something important that everyone else has missed. Excluding some from all or parts of society can hurt or hold back us all. Imagine how much poorer our understanding of the universe would be if Stephen Hawking had not had the provision made to develop and share his ideas with others?

For non-verbal autistic people, everyday activities can be a huge challenge without proper provision for their needs. Imagine trying to go to school, work or just to the shops without being able to speak or having a readily available alternative. Our society is still heavily based around speech as a primary method of communication without recognising that those that struggle with speaking through no fault of their own need provision in the same way that those who struggle with walking need adaptations and adjustments to provide the access they need. The solution is there in the form of AAC and autism apps, but the cost can often be prohibitive. Can you imagine someone who cannot walk being priced out of even a basic wheelchair in a developed country?

In fact, non-verbal autistic children may find it hard to access a proper education at all, let alone find employment. Access to both education and employment are fundamental rights under the Universal Declaration of Human Rights, but for non-verbal autistic people the cost of the basic AAC provision they need prevents their access to and use of these rights.

Time spent in lockdown has demonstrated that many of us are able to continue with our education or employment with a much lower reliance on spoken communication, even using the phone or zoom. Many things can be dealt with just as easily by text, email or webchat, yet these are often not offered as a standard alternative to speech in many situations. Some of the problem is down to closed minds and excessive costs not a lack of AAC tools, where technology has proved a huge plus for many autistic people.

Neurodivergent people are held back by a lack of adaptations and adjustments in many other areas too. Autistic people often struggle with hypersensitivity to certain stimuli, such as sound or light. Yet the current trend in office and workspace design is to have large, open, bright spaces which can get very noisy and over stimulate those who find bright light difficult to cope with. These principles are so engrained in the overall design of the spaces that often the adjustments needed for the basic right to access the workplace are impossible without major building work. This cannot be right.

The needs of neurodivergent people are still very rarely taken into account either in the design of new facilities and services or considered as adaptations required in those that already exist. Some shops ae now offering special times for autistic people to visit when sounds and lights are kept low – a great step forward. But the long-term goal should be for organisations and business leaders to properly take into consideration the equality needs and rights of autistic people, including those with non-verbal autism, and build in free AAC provision wherever possible.

It is much easier to build in the needs of all when starting from a blank page, but this can only be done if the designers know about and recognise all the groups that need to be provided for. This is simply not the case for autistic and non-verbal people at present.

The Way Forward

We all have human rights, whatever our needs, strengths and weaknesses. We all have the right to see through the fence, or at least an easy way to be helped to see over it! But at present some of us are offered only a box to stand on that we cannot afford to buy, or the fence is designed in a way that others of us cannot bear to look at it at all, even to try and look through it to what is beyond.

So when and how will these human rights be properly addressed? The journey is likely to be long as it has been to bring people their basic rights in other areas, such as rights to vote and for wheelchair users to access public buildings.

In the area of non-verbal autistic adults and children, there is at least a hole in the fence emerging in the form of app2vox. This is a completely free AAC app for phones and tablets that enables non-verbal people to communicate and take up the basic rights to which they are entitled. We believe that it is wrong to profit from removing the barriers that society has chosen to put in the way of some – when we all live well and to our full potential, we can and will all benefit.

App2vox offers a full range of communication tools for non-verbal people to give them the voice they need and deserve as a basic human right. The system is intuitive so easy to use, adapts to how you use it and can be personalised to meet the needs of the user, be they at school, at work or on a trip out for fun. The app lets non-verbal people do what many of us take completely for granted – communicate with those around us in any and all situations.

Conclusion

With so much progress made in some areas of society in recent years, it is a tragedy that the needs and basic human rights of non-verbal autistic people have been so badly left behind. It is high time for this to change. Much greater regard to the needs of neurodivergent people generally needs to be taken in planning and adapting facilities and services, and additional tools needed to gain basic access, such as AAC,  should not be expensive and thus themselves inaccessible to some of those that need them most.

App2vox is a big step forward for non-verbal people towards grasping the basic rights to which they are fully entitled. Let us hope that many more such steps follow in the near future.

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