International Day of Persons with Disabilities

This is not something I usually write about so please don't judge too harshly, my friend Ana pointed out that Tuesday is 'international day of people with disabilities' and suggested I may like to write something, it really is an important topic so I decided I would write something based on my personal experience as a disabled person, I could have written statistics or given examples of people that have experienced tremendous hardship, but maybe it's better to write about some of my own experiences as one of the lucky ones.

Okay I said I wouldn't write statistics or about other people but some background is really needed before I start, there are over one billion people living with some form of impairment, these people often face barriers to becoming useful members of society, or even to just live. These barriers come in many forms, the physical environment, using information and communications technology (ICT), those resulting from legislation or policy, from societies attitudes or discrimination that disables these people. This results in people with disabilities not having equal access to society or services, including education, employment, health care, transportation, political participation or justice.

The Convention on the Rights of Persons with Disabilities (CRPD) recognises that the existence of barriers constitutes a central component of disability. Under the Convention, disability “results from the interaction between persons with impairments and attitudinal and environmental barriers that hinder their full and effective participation in society on an equal basis with others.” Accessibility and inclusion of persons with disabilities are fundamental rights recognised by the CRPD and are pre-requisites for the enjoyment of other rights. Article 9 of the CRPD, accessibility, seeks to enable persons with disabilities to live independently and participate fully in all aspects of life and development. It calls upon States Parties to take appropriate measures to ensure that persons with disabilities have access to all aspects of society, on an equal basis with others, as well as to identify and eliminate obstacles and barriers to accessibility.

The CRPD is an excellent convention but does it actually work? Like I said I have been lucky in my life, I have had a loving family, have friends who never judge me, live in a first world country with free healthcare and have been given a decent education, but despite this I have still experienced barriers and had to fight for rights that everyone should have, here are some of my experiences and stories.

Primary school picture of me

I was able to go to 'normal' schools, I think all children deserve this and I'm grateful that I was given that chance, but I was not able to be treated completely the same way as other pupils. Some classrooms weren't physically accessible, I don't expect schools to be rebuilt for just one person but maybe some classes could have been moved from inaccessible rooms to accessible ones? Could I also not of joined in some parts of physical education rather than to be simply excluded? I experienced great negativity from the deputy headmistress when choosing my secondary school, she made it quite clear she thought I should go to a 'special' school and on occasion would give talks in assembly that were clearly aimed at me, quite embarrassing when you are a shy teenager. I was put in remedial Maths (set 8) when I started secondary school, this had absolutely nothing to do with my abilities and was purely based on the fact I was 'disabled', to be honest I didn't mind, we had a great teacher and I was able to help some of the other pupils understand the subject better, by the time I left the school I was in the top class (set 1) so it didn't hold me back too much, but it's a good example of attitudes that should be changed.

Picture of me at fifteen

At fifteen I had to leave my hometown due to my Mother being in a physically abusive relationship, we literally had the clothes on our back, we threw ourselves at the mercy of the local social services and council. The council did find us housing, not in the town we arrived in, but another one nearby, we were put in a unit which dealt with disabled people who were transitioning from living in a sheltered environment to being independent and living on their own (apparently this was the only place they had), we had a tiny room for us both to share and a communal kitchen, lounge and bathroom. We were then moved to a single bedroom flat which was considered temporary housing (we were there a year), it was far from accessible, a large step to get in, a tiny kitchen I couldn't get in, access to the front door was so bad that when I broke my ankle the ambulance crew had to pass me through my bedroom window as they couldn't get the stretcher out the front door. This may sound trivial and yes in a way it was, at least we weren't on the street, but there were also other things at play, social services made it quite clear they weren't happy to have to put us on their books, they along with others tried to get us to move back to my hometown (where my Mother would quite likely have ended up dead), we were told if we didn't accept the first reasonably accessible flat we were offered that we would be put in the worst part of the town, yes social services and councils are not known for being friendly but this was different, it was about them knowing I would cost more than others, that was obvious and ever since we have had to fight for everything we need.

This year in my charity funded wheelchair

More recently I have had to fight with wheelchair services, we are all entitled to freedom apparently, I had been in bed for several years as I had severe panic attacks and my old wheelchair, well over ten years old, was no longer suitable. I asked them for an assessment, told them my physical needs and waited several months, they offered me a basic indoor power wheelchair, it didn't meet my physical needs at all and didn't give me freedom, I argued and was eventually offered an indoor/outdoor power chair, it also didn't meet my physical needs but I hoped it could be adapted. Then came the restrictions, I could only use it on public footpaths, it would be speed limited (not that NHS chairs are particularly fast in the first place), god forbid I use it on grass! I argued that they were not enabling me to perform the basic activities of daily living, their reply "we only support the activities of daily living within your home", I asked what would happen if a footpath was blocked or there was no drop curb to actually get on the path so that travelling in the road was necessary (a quite common occurrence), their reply "call a taxi to get where you are going" or "call the police to get a car moved that's blocking the pavement", you may think this was because they were concerned with safety but it's not that at all, the highway code includes guidance for 'invalid carriages' using the road, you have to get a tax disc for certain classes of 'invalid carriages' and power chairs are often shown in their advertisements going on grass or driving in the road, they are designed to do so and expected to by the government.

These are just a few things I have personally faced, there are others but this isn't an autobiography, they are barriers to living a full, equal life and becoming a useful member of society. I have overcome or just fought through a lot of things, I managed to get a suitable wheelchair without NHS restrictions through charity, I didn't want to do this, people were extremely generous and kind but it's still a somewhat demeaning process when you want to give to society not take more from it. Now I am able to give something back though, I have been able to attend meetings, I have become part of a group which has given training to charities, advised the council, police and health bodies and is fighting for equality, this I have achieved despite the barriers placed in my way.

Disabled beggar in Dhaka, Bangladesh.

I live in a modern, rich, first world country that supposedly doesn't tolerate hate crime and promotes equality for all, just imagine less fortunate people in other countries, places where even healthy children find themselves abandoned by society, and government if they just happen to be the wrong sex, what barriers do children with impairments face in these places? How many get an education? How many actually survive to adulthood? How can they possibly contribute if not given the chance? Things have to change for everyone with impairments, physical or mental, we are wasting a huge resource, fifteen percent of the world's population are disabled, some could work given proper support and provide money for economies, which are struggling worldwide, others may be the next Einstein or Beethoven, then there's the others who may just make you smile and brighten up your day, everyone can give something back to society given a chance.

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No problem Rich, feel free to share and thank you.

Daniel replied 3 years ago

What a powerful reflection Daniel. Thanks you so much for sharing this. if you don't mind I would like to share this on twitter, as I think you insights will help us all reflect on our attitudes to disability.
Rich

Richard Holmes replied 3 years ago

Thank you Daniel for telling your story - and with such equanimity too! It is great that you are making such a timely contribution to achieving greater social justice for people with physical or mental impairments. No one can read it without thinking hard about the ways in which the actions and attitudes of so many of us, unintentionally or thoughtlessly, place restrictions on, or exclude from mainstream activities, a group of people who clearly have a lot to offer. Please keep writing!

John Colquhoun replied 3 years ago

Thank you both :)

Daniel replied 3 years ago

Brilliantly written & poignant!

Yu Egret replied 3 years ago

Amazing piece, Daniel.
Thank you so much for sharing that part of your life with us. I don't think 'moaning' relates to you or many other people. There isn't a 'meter' that tells us when we have 'right' to complain or feel bad about something, or in what measure. I think your approach is an active and strong one and it definitely helps put some inconvenient issues on the table with a very personal background that only can add value to your words. You rock!

Ana Biurrun replied 3 years ago

Thanks for the great feedback everyone, I don't often share personal stories because I know others have things far worse, and moaning doesn't help anyone either, but today is a special day and hopefully sharing my experiences together with the many others who are writing or speaking today will lead to change.

Daniel replied 3 years ago

Thank you Daniel ;-)
I have been lucky enough to spend time in India and your words and observations are very moving to me after experiences I had there, but yep, you don't have to go all the way to India to see the injustice that is present in this world. Thanks for sharing this.

Jay Bigford replied 3 years ago

Thanks Daniel. Phew, what a strong piece. Thanks for taking the time to write it and share it. It really conveys the ongoing battles that you have to survive, to make even the most basic of things happen or to make the most obvious of points. Everything seems to come back to you to sort out. There's no sense of shared responsibility, or agencies working with you to support you to navigate the barriers. It feels like everyone makes it your issue, not a shared issue. That must be a tough place. And yet you still have space to think about other people elsewhere in the world who have even more barriers to face. It really motivates me to keep chip, chip, chipping away at making sure that everyone has the chance to make the contribution that they want and live the life they choose - or as you put it "so everyone can give something back to society given a chance".

Sally Byng replied 3 years ago

The points you make are strong valid ones, and its scary we still use terms like "invalid carriages"

You do give an immense about back, far more than you take, and I don't think you realise just how much you have and do contribute to people's lives, not because you have a disability or even in spite of it.

You are just you, a strong, insightful, intelligent person. I am sorry you have had to fight, but I am glad you have never given up, and have stayed strong, even when you haven't wanted to.

I hate saying anyone with a disability is inspiring, as its demeaning, but you are inspiring because of your character. Thank you for being my best friend and inspiring me every day to be the best person I can be.

Kylie’s picture

Kylie replied 3 years ago

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