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Gordon's D-Zone Arcive (2006-2014)

Monday, April 08, 2013

My Special, Differently-Abled Challenged Sort of Life...

Call me a disabled person...

I’ve been called many things in my life when people wanted to refer to the fact I had a physical impairment, way long before I acquired my visual impairment.

I admit that I was ready to accept being called a “person with special needs” and preferred to refer to myself, if the situation required that I mention my impairment, as “physically challenged”. I found a little problem with having to talk of my physical impairment as a boy and I tried my best to pass off as ‘physically normal’.

Back then, I would not have imagined that I would come to describe myself as a 'disabled person' - a phrase I detested with a vengeance when I was much younger. But, yes, if you asked me today, I would tell you that I prefer to refer to myself as a “disabled person”. However, more on that later…

Misleading Euphemistic Phrases…

Of course, disabled people have been described in very derogatory terms ranging from “cripple”, “retarded”, “deformed”, “defective”, “wheelchair-bound”, “deaf and dumb”, “mental” and so on and on. These labels may be given to disabled people in general or to particular impairment groups. However, they all invalidate our worth as human beings which reminds me that “invalid” is also the term that captures what is meant when they call us by all those names.

But why haven’t I included the term “disabled person”? Yes, I use it today but it's not a term that some disabled people would want to identify with. The main reason is that both the general public and a number of disabled people misinterpret the term as meaning “lacking in ability”. And, yes, that interpretation is rather similar to calling us “invalids”. Yet, as I will explain later, this is not what disabled people who formed the first movements composed primarily by referring themselves as “disabled people”. But, be a bit more patient for first I must reveal my top three terms that I dislike being referred to today since choosing to refer to myself as a 'disabled person'..

Differently-Abled. Who me?

I’ve heard the media using this to describe disabled people and even some disabled people themselves to describe themselves. I suspect it’s a term that is meant to replace the term “disabled”. Yet, on close examination is meaningless and is really a term that can be applied to the whole of humankind.

For aren’t we all, disabled and non-disabledpeople, ‘differently abled’ in our own ways? For not everyone knows how to write a book, how to fix a car or how to  sing, for example. There is no such thing as a “normal ability”.

In fact, whether one has a skill or ability depends on many factors, including the person’s own likes and dislikes, social and family background and life circumstances, including whether one has an impairment..

To claim one is differently abled is like saying I’m a human being or stating the obvious. Ability is most often a matter of opportunity and everyone in this world is, in fact, 'differently abled' if you think about it and as disabled people, I don't think we have any special privilege to make use of a phrase that really isn't saying that much but, in my view, actually emphasising our differences as if they were very different than that of others.

Explain to me exactly what are my ‘special needs’?

This takes me to the second term, I confess, I did accept as young boy. Today, I realise how this term is oppressive because it appears to imply that we are, in some way, an alien people. Not in the sense employed in immigration law but in the sense that we're somewhat 'out of this world' and that we are somewhat an alien species.

But, when I ask people, what exactly are my special needs? They often mention two things. First, my wheelchair. Second, is the lift. Delighted that they believe they answered correctly, their faces beam expecting me to accept their brilliant answers. But, I point out that they're wrong because  the wheelchair and the lift are means to fulfil my needs, they aren’t needs themselves. 

Indeed, my needs are exactly the same as any other person. I need to move around or to be mobile, so I use a wheelchair to realise that need. I need vertical access to buildings higher than one floor.

And, yes, if tomorrow new technology was invented that made either the wheelchair or lift redundant, I would use it if it was better than the existent technology. Butt no, I’m not bound by my wheelchair! In fact, it permits me to go places I would have never been able to go… It gives me the independence and mobility other people have! 

I’m challenged… You must be joking!

Another phrase that, at first, appears to be nice and politically correct is when disabled people, depending on their impairments become ‘challenged’. I was physically challenged and then became visually challenged. So, now I’m both visually and physically challenged. Am I brave or not? Of course, I’m being sarcastic here. Yet, I was more ready to accept being regarded as ‘challenged’ rather than ‘disabled’.

However, the problem with describing myself as 'visually and physically challenged' is that, this follows a medical model view of disability by implying that the problems I have in my daily life are simply due to my impairments.

In this sense, my impairments are the ‘challenges’ I must face on my own. It can give the impression that disabled people are exceptional people if they are able to overcome their ‘challenges’. Yet, those who may need extra support or do not 'succeed' in the eyes of society are often cast of as 'lazy' or 'pathetic' and, worse still, told off for not being to achieve like those disabled people who are deemed to have 'overcome their challenge'.  

Yet, if I accept that, say, I’m physically challenged, I am accepting the fact that my impairment is a personal problem and it’s up to me alone to get over such a ‘challenge’. It’s assumed that it’s my destiny, fate I must deal with and a burden I must bear. And yet, is impairment really the great ‘challenge’ I have to face alone? Is it my and only my problem?

Yes, I am a disabled person…

The problems with all the misguided attempts at political correctness is that they start off by assuming that the problems we face as people with impairments are simply  related to the fact we have an impairment.

 

'Differently-abled' attempts to present us in apparently more tolerable terms or close to 'normal' but the label 'differently-abled', when examined, is without real meaning. The second term, 'special needs' attempts to present us using   flattering language like ‘special’ when it calling us 'special'

 is actually reinforcing the ideas that we are not fully human or that we are very different than other people to the extent that our needs are 'special'. The last term which describes us as somewhat 'challenged''  is defining us using  the same idea of a medical  model view of disability which roots all our problems in the fact we have impairments using nicer language.

Indeed, all the three euphemisms appear to be a reaction to the term ;disabled person' as this term is assumed to be negative and oppressive. However, I choose to define myself as a 'disabled person' because I came to understand what it really meant and that, in fact, it's a positive and liberating self-definition.  

Why am I a disabled person?

If I thought that calling myself a disabled person is negative and belittling, I would not use it. If I thought that it implied I lacked in ability, I would not use it.

Yet, when disabled people in the early 1960s came together for the first time in history, they redefined the meaning of disability. Indeed, while they recognised impairment as lack of functional ability, they observed that it was not the main barrier that was preventing them from being included and to be active participants in their society.

The early movements of disabled  people rooted the problems faced by people with impairments in the way society itself was structured and organised in such a way as to take “little or no account people with impairments’.

Nothing about us without us!

When I discovered the social model of disability,  I realised that the problem wasn’t only  my personal problem any more but something largely imposed on me by society on top of my impairments.

 Thus, by affirming I am disabled is a political statement by which I am affirming that impairment has little or no part to play when I am excluded but, rather, it’s the structural and attitudinal barriers that prevent me from benefitting from my human rights.

That is why, readers, please call me a disabled person.

And, no, I’m not one of ‘the disabled’ but part of an international community of ‘disabled persons’. We may share in our experience of disability, but we are also unique and different in our own ways but we’re not a uniform and a homogenous bunch of people.  

Indeed, our goal as disabled people is to break down the disabling barriers that still exist around the world. And to emphasise the fact that we want to be full part of our world and societies. Affirming that we are disabled is an affirmation that our disability is not due to the fact we have an impairment but a proclamation that  we believe our societies have failed us and it should change in a way as to take us into account as whole human beings.,

We want to be actively included in all areas of society and we want to be involved in matters that concern us. And that means that we are part of society and not remain left apart from it. The motto adopted by the international disabled movement says it best:  

Nothing about us, without us!


Note: This entry was last edited on April 10, 2013.


Tuesday, April 02, 2013

The Inclusive World We Want for 2015

OPENING

It’s important that the move towards creating an inclusive world is inclusive of disabled people from the start. While there may be action that is particular to people who have a specific impairment, the overall objective underpinning an inclusive world should be mainstreaming and not segregated services.

Besides, such segregated provision is often required due to the fact that our societies don't take us, people with impairments, into account. Departing from an approach that disabled people have any "special needs" would be denying the fact that our needs are not different than the rest of the population. It's only in the way we fulfil those same needs that there may be differences.

The  structural and attitudinal barriers disabled people face on a daily basis can affect every person throughout the course of his/her life making this issue a matter of human rights and not an issue of 'minority rights'..

Thus, disability is an issue that affects us all - whether we are non-disabled or disabled people. Indeed, considering that people are living longer in the minority world*, it makes sense to create a world that is already inclusive and accessible to a wide variety of people who have different impairments.

At the same time, we cannot forget that each priority field identified in the questionnaire created for the World We Want initiative depends on the realisation of the other priority areas identified. For example, if our environment continues to deteriorate at the current rate, the other priorities will become unsustainable and even unrealisable. 

The environment is key to sustaining the world for all of us, irrespective of our impairments. Our relationship between us, as human beings, and the environment is one of co-dependence. . 

PRESERVING THE ENVIRONMENT

Having said that, for the purposes of this discussion, it must be acknowledged that this concern with the issue of the environment is an issue that is the focus of other United Nations agencies. All the same, as disabled people, the implications of, say, deforestation and pollution are more likely to have more serious impact on one’s quality of life and we have already witnessed what impact an environmental disaster could have on populations already deprived from access to essential facilities..

Moreover, the urgency of environmental concerns tend to be more pronounced in many parts of the majority world*, Therefore, the issue of the environment as represented by the priorities below are top priorities if we want to have a good quality of life in the entire world as disabled and non-disabled people:

Environmental Concerns

• Action taken on climate change

• Protecting forests, rivers and oceans

It's a reality that the demand on energy is bound to continue increasing in the whole world. Be it by the increased reliance on energy that has existed for decades and the ever-growing need of energy in the majority world. It's unfair to expect that countries in the majority world to forfeit their entitlement to more energy .

The whole global community should work together to address our common environmental concerns - which should also be our concern as disabled people.

Apart from the fact that energy depending on fossil fuels won't last forever, the use of this type of energy is damaging our environment and resulting in climate change. If a strategy to invest in sources of renewable energy is not undertaken soon, the world population will have to face a serious environmental crisis the may prove to be irreversible.

SUSTAINING HEALTHY LIVING

Like any other person, we are born in a society as individuals. The services offered by hospitals and medical staff are important as they help us in ensuring that we remain healthy and maintain a good quality of health and help us in situations involving injury or disease. This is why access to health services and facilities remain essential in ensuring we have a chance to live a healthier life as disabled people.

Having said that, this doesn't mean that disabled people are in some way "sick". Indeed, while there is a place for treatment and rehabilitation intervention, such intervention should be aimed at maximising the person's potential but not at the expense of the person's other aspects of life, including his/her education or social life. Moreover, in any measure that will involve medical intervention, disabled people must be given information in a format they can understand and be free to take an informed decision.

In addition, medical information should be provided in accessible formats so that both disabled people and family members have access to information in a format they can access and understand. It's also important that medical services are provided in physically accessible premises and that people requiring the services of a sign language interpreter have access to such services.

It's of utmost importance that doctors and people involved in health care are provided with Disability Equality Training (DET) as part of their education to ensure that they are able to move away from assumptions that   living with impairment should lead to a poor quality of life and is a personal tragedy.

Health care professionals should also make it a point to keep up to date with developments that could help improve on the general well-being of disabled people in their care. However, it's important that the disabled person remains involved in the decision process and such intervention should be decided upon by considering the implications of such intervention on the disabled person's quality of life.


One must also make sure. that disabled people and their families have adequate access to clean water and proper nutrition since these are still problems in parts of the majority world and it's not excluded that they might become an issue in the minority world as all in the coming future, thus the following concerns must be addressed:

Healthy Living Priorities

• Affordable and nutritious food

• Access to clean water and sanitation

• Better healthcare

RELIABLE AND INCLUSIVE INFRASTRUCTURE

In order for disabled people and their families to be truly included in their communities, they must also be supported and connected to those around them. Thus, they should have equal access to the proper tools and resources to be able to enjoy a decent standard of living. In the importance of having a reliable source of energy and the proper infrastructure to allow communication to the outside world are crucial today in ensuring that disabled people have a good standard of living.

Indeed, if you consider the potential of the Internet in enhancing the life of disabled people to access sources of information, education and means of social interaction, one cannot underestimate the real value of Information &Communication Technology (ICT) to improve on disabled people's quality of life in the context of a connected world. , Thus,

it is of fundamental importance that mainstream sources of knowledge and information, especially the Internet should adhere to international web access standards to allow disabled people using any assistive technology to access the Internet to do so on an equal basis with others.

Having said that, this doesn't diminish the importance of creating an environment that is accessible to all. While it's good that buildings and public places are accessible to everyone, irrespective of impairment,

Even if Information & Communication Technology (ICT) has the potential to improve on our quality of life and opportunities as disabled people, ICT shouldn't be regarded as a replacement for our inclusion in society or that now we have ICT, accessibility to the outside is not a priority for disabled people any longer. Rather, ICT should be seen as complementing our full inclusion in society.

Thus, it's equally important that roads and transport systems are also accessible to all, especially people with mobility impairments. Let's not forget that public transport may be the only option open to disabled people living in the majority world.

Infrastructure Issues

• Reliable energy at home

• Phone and internet access

• Better transport and roads

EDUCATION AND EMPLOYMENT

The areas of education and employment are inter-related. Thus, the importance of providing an education that is truly inclusive by putting the disabled child at the centre of the educational process cannot be emphasised enough. This means that inclusion should be a priority inn education at all levels of planning - ranging from the physical accessibility of the educational environment (including the area where formal education is provided to the areas staff and students gather together in a less formal setting.

In practical terms, this involves considering the child's strengths and weaknesses and factoring in the child's impairment inn their educational plan. Thus, inclusive educational planning should involve all stakeholders to ensure that the child is given the necessary support and guidance to access a good education. One must also stress the importance of planning the student's education with the involvement of the child him/herself when developing such a plan. For education to be truly inclusive, the child's particular fears and aspirations should be considered - as well as the impairment.Thus, educational provision might require providing information in an accessible format and may even involve modifying the syllabus in case of children with intellectual impairments so that they can learn in their own time with the other children.

The purpose of inclusive education shouldn't  primarily focus on educational attainment but, more importantly,  on the development of the personal and social skills of the child.

One must also consider the language of instruction because some disabled people who use sign language may find themselves disadvantaged in a classroom where the teaching is meant for hearing students. In such circumstances, educational authorities should consult with organisations of the Deaf and parents to decide on the best interests of the child and with the child's involvement in such an important decision. However, the purpose of inclusive education remains to foster a culture of inclusion where disabled and non-disabled children learn about each other and understand they can co-exist with one another.

Ensuring disabled people have proper access to education improves on their prospects of finding good employment opportunities. On the other hand, one must not forget that if workplaces are inaccessible or employers are unwilling to consider a disabled applicant, disabled people may still find it difficult securing a good job.

In addition, one must keep in mind that not all disabled people can access the open labour market and they should be supported to earn a living through other forms of work, such as self-employment. Having said that, it might be appropriate to explore whether disabled people can't work because they had no access to a proper education or training opportunities. One must also consider that as some individuals might acquire an impairment during their working life, its in the public's interest that there are opportunities for training and retraining for all.

However, if the nature of the person's impairment prevents them from doing any conventional work, they should be assisted to live as independently as possible and supported to contribute to their communities in a meaningful ways if possible. On the other hand, disabled people who are unable to work shouldn't be forced to work or have their basic benefits reduced.

 

Creating Inclusive Education and Employment Environments

• A good education

• Better job opportunities

• Support for people who can’t work

PERSONAL FREEDOM AND CIVIL RIGHTS

Last, but not least, an inclusive world shouldn’t limit our rights and opportunities as disabled people to traditional areas such as that of health, education or employment. Indeed, we should be actively included and involved in public consultations in decisions that affect our countries. In this sense, an inclusive society should ensure we have an equal representation in discussions and in matters concerning public policy development and implementation. Indeed, if we are to be truly included in public affairs our civil freedoms and liberties must be respected and safeguarded since without them, we risk being disadvantaged when it comes to cleaning our rights and expressing our opinions.


Thus, it's imperative that, as disabled men and disabled women, weare treated equally as any other citizen.

Equal treatment doesn't imply that we are treated in the same way because in order for us to be truly equal, the structures that disable us in society need to take us into account.

The legal system should also ensure that we can live our lives without fearing to be victims of violence, discrimination or abuse on the basis of our impairments. It's also important that those disabled people whom choose to participate more actively in politics are provided with the necessary support and assistance to participate in politics.

Whilst it's good to see more disabled people represented in politics, the electoral system should allow every disabled people to vote without fearing discrimination or injustice and the voting system should also be accessible to all, especially those who cannot vote independently or in secret, like myself. Other alternatives, including technological solutions should be considered to make voting accessible to all.

Having said that, in order to ensure that the civil and political rights of disabled people are respected it is fundamental that the government acknowledges the equal rights of disabled people and takes concrete action to implement these principles in its own structures and in the provision of public services. Governments should also ensure that the judicial system allows disabled people adequate support and protection in cases of abuse or discrimination on the basis of impairment.

In implementing the principles of inclusion,  governments should also set an example by, for example, factoring in  accessibility and practicing inclusion within its own structures and involving disabled people and their organisations on boards and committees. Thus, these are key areas to consider:

Personal, Political and Civil Liberties

• Protection against crime and violence

• Equality between men and women

• Freedom from discrimination and persecution

• An honest and responsive government

CONCLUSION

The fact that I chose to put the environment, on the top areas of priority, followed by health, education and employment, infrastructure and personal freedom, does in no way indicate that the last priority areas identified are of less importance. Rather, my intention is to highlight the overarching importance of a sustainable environment to guarantee our access to the other areas of society. for disabled and non-disabled people alike..

I also want to clarify that even in Malta, my home country, disabled people have achieved a lot in terms of equal rights even before Malta ratified the UN Convention in 2012. Disabled children have been included in our educational system through our inclusive educational policies, disabled people are also assisted to become engaged in work through various schemes and we are also included in boards and committees aimed at developing national policy. Our comprehensive Equal Opportunities Persons with Disabilities Act (Cap 413) has helped many of us progress in terms of equal rights and opportunities.

I'm not saying that there's no more to be done for disabled people to say that we are fully  included in our society. However, it must be said that we have achieved a lot already and we need to work together to achieve our objective of creating a truly inclusive society. Thankfully, political parties in Malta so far have supported the principles of inclusion in every area of national policy. However, there's still a strong need for disabled and non-disabled people to continue working together to create an inclusive society and an inclusive world.

An inclusive world is, after all, a world that is inclusive of everyone! 

* In this contribution, I have used the terms "majority world" to refer to the parts of the world were the largest number of the human population lives and "minority world" where the rest of the population lives. I refrained from using the terms "developing" and "developed" countriessince these terms are biased towards Western ideas of development.

LAST WORDS

I thank the United Nations of giving us the opportunity to participate on this online forum. I hope that you find this feedback useful in the important work to make an inclusive world a reality.

Regards,
Gordon C. Cardona
rep. Maltese Council of Disabled People (MCoDP)
(affiliated with DPI)

 

 

Selected Readings

LINK Latest Reports on Malta and disabled people compiled by the European Network of

EuropeanDisability experts (ANED)

PDF Inclusive Education: A Special Right?
An article discussing athe right we have to an education within the mainstream appearing on a Commonwealth Education Publication.

PDF The Politics of Exclusion
An article which was originally published on an edition of "A Different View", a publication issued by the International Association for Political Science Students (IAPSS) of August 2006. The article featured on pages 5 - 6 of the publication which can be downloaded from here.

LINK Overcoming Disabling Barriers
This article explores the way a number of disabled people and a parent of a disabled child living in Malta, a small island in the Mediterranean, look at their daily experiences of disability and talk about what changes they would like to see in Maltese society for them to feel more equal and included.

blog GORDON'S D-ZONE
A blog about my life from my point of view as a disabled person can be found at Gordon's D-Zonewhere readers may find a variety of posts related to disability, including newspaper articles, letters, personal accounts and more light hearted posts.

About This Article

World We Want Logo
This was a contribution to the Online Discussion happening at the United Nations to discuss how to make the world a more inclusive world happening at: World We Want 2015. I encourage disabled people and allies to join in the discussions while you're still in time!

Disclaimer

While I'm submitting this on behalf of MCoDP, the opinions expressed here don't necessarily reflect the views of all members.