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A year to move out of the shadows

As we are about to embark on a new year, I join my voice to all those who express their wishes that 2023 will finally be a year of peace and justice, with respect for both humans and planet. With many others, I am calling for a year where our actions and relations will be defined above all by kindness and humanity. Without these fundamental qualities, our lives would surely become hollow and lack any real meaning.

But on this day when social media is flowing over with good wishes, I am compelled to once again point to a basic fact: creating a society where we as human beings can enjoy human rights must not be confused with charity, self-righteousness, well-phrased speeches or mere good intentions.

Believing that human rights are a generous act of exceptional kindness and good-will, is by the same token condemning countless of our fellow human beings to lives of deprivation and indignity. Conceiving human rights as an idealistic aspiration – yet another wish for the new year - means that actual implementation will continue to be indefinitely postponed to another decade, century or millennium.

For those who have not yet been personally directly affected by human rights violations, it may be hard to even realise that there is a problem. So much in our daily lives is invisible, normalised and taken for granted. Empathy is at least a beginning – having the interest and ability to imagine the world from the position of another person. But imagination is not enough – to gain sight of what is invisible from our own position, we need information. This is why today I am sharing with you my experiences of a topic is seldom spoken of: the invisible costs of living with disability.

First, to be clear, when I speak of invisible costs, I am not referring to the obvious and more visible burdens of disability, such as physical limitations, costs of indispensable assistive technology or even medical treatment of health conditions caused by the disability - for instance, as a wheelchair user, constantly staying in a seated position exposes me to osteoporosis, as well as increased risk of certain infections. No, what I am talking about here are the countless unnecessary costs that remain unrecognised, but that nevertheless affect almost every aspect of my life as a person with disability. These range from the minimal to the existential.

In my personal case, I am completely dependent on assistance and accessibility at every moment and in every situation. This means that every kind of service has to work as intended. And since in the ways our societies are organised, nothing actually does function seamlessly, I constantly end up paying for “special” service. Not as a VIP who wants to enjoy that little “extra”, but as a necessity. If public transport is not accessible, I have to pay for special transport. If busses that replace a delayed train cannot accommodate my wheelchair, I may end up stranded in the middle of nowhere. If employees who are supposed to assist me at an airport are not sufficient trained and attentive, they will hurt me or cause an accident. In countries where such employees are typically underpaid and overworked, I almost always end up paying generous tips, just to make sure that I get the minimum of attention and care that I need.

I live in an accessible flat in my “elegant exile”, as I sometimes call Sweden where I had to move because of the Syrian war. This is certainly a privilege compared to so many persons with disabilities who do not even have a place to live that is adapted to their needs. But the flat I live in is both larger and more expensive than it would be if I did not have a disability. I need space for basic assistive equipment; the width and spaces and corners must give me sufficient room to move at home with my wheelchair; I need space for office equipment since I work mostly from home, and as a human being I also need space for ordinary furniture so that my home can function as a social space.

If I were to live my social life entirely outside my home, I would be faced with another set of obstacles and costs. Even in a country that prides itself on equal rights, very few public spaces are actually fully accessible. Additionally, for several months a year, weather conditions make it dangerous or impossible for me to move in the city with my wheelchair, so if I could not receive visitors at home, I would be living in a state of solitary confinement.

As many Syrians, my relatives now live scattered in different countries. None live in homes that are accessible to me. To travel and visit any of them, I would need to book accommodation that is accessible, and since accessibility is still considered a luxury, such accommodation is not cheap. To move, I would have to face the usual cost of booking special transport, and to take a plane I cannot book the cheapest flight or connection, but am restricted to direct flights, as well as airlines and airports that ensure a sufficient level of accessibility to make the journey possible.

Another example is assistants. Swedish social insurance does cover some hours of assistance, but standards are currently counted in a way that does not cover actual needs. Added to that is the fact that several situations require double assistants. This is not foreseen in allocation of assistant hours, but is practically necessary in any place that does not have assistive technology for lifting.

They say that time is money, but the additional time I have to spend as a person with disability is never counted or recognised - making special applications for assistance, reimbursements of expenses, or providing documentation again and again that due to polio in my early childhood, I cannot walk, stand, or move my own body.

Looking at the bigger picture, in a world that expects mobility and flexibility, I am constrained to plan in advance to make sure that the complex logistics of accessible workplace, place of residence and insurance system make an option feasible. I can never “grasp opportunities”, or “just try and see” if something works out, and so opportunities inevitably pass me by. I cannot simply expect to easily find jobs that match my qualifications, or to earn a salary that covers my expenses. The gender gap in income has received some attention, while the “disability gap” has not been heard of outside the field of disability rights activism.

These are just some examples, experienced in a country with high ambitions concerning equal rights and non-discrimination. Invisible costs – in time, energy or money - are something I am expected to contribute with myself. Even in this context of relative privilege, I am expected to be grateful just for any chance to engage in meaningful work. Try then to imagine the situation of all those persons with disabilities living in countries where not even a minimum social insurance exists.

I also have the great “privilege” of having a highly visible disability, where medical diagnosis and social recognition are seldom a major issue. This is not the case for people who struggle with the invisible costs and hardships linked to invisible disabilities. Traditionally, such disabilities have been placed under the umbrella of “mental health”, psychiatric disorders or cognitive limitations, although in fact the term covers a much wider range of conditions. If there is stigma around disability in general, this is doubly the case concerning invisible disabilities, which is also why so many are reluctant to inform others about their particular needs and accessibility issues.

Among your resolutions for the new year, please remember not to take anything for granted or to make assumptions about your fellow human beings and the situations they may be experiencing. Every person has unique abilities and ways of contributing to peace and justice for the planet. Having a disability – whether it is visible or invisible – is nothing to be ashamed of, just as we should not feel embarrassed of speaking of the costs we have to bear. For society to change, the invisible must become visible.

ps When you see a person at an airport, please don't assume that they are there for fun. You don't know the pain behind this picture of me smiling in my orange dress, or the situation of other people you may meet.

Chavia Ali

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