Month: September 2019

Reflections of my education

Today SEN in a mainstream environment is widely accepted, but I think it is essential to recognise how things were used to be. I am going to talk about my experiences quite openly, not out of glory or pity but as an example of how things were.

I was born in 1974, and I have significant cerebral palsy where my speech impairment has been my most considerable disadvantage as people assume I lack intelligence. The irony is I am hyper-intelligent, think Sherlock Holmes, which is a curse when you have a spastic body, again just factual, I have lived well.

My first school at aged 2 was a mental hospital, and the child unit became the ‘QE2 Jubilee School for the Mentally Handicapped’, opened by the Queen.

The teachers very clearly understood I did not have learning difficulties, and I was bright. This revelation sparked the first attempt at integrating me into a mainstream school, which in the late 70s was unheard of.

They tested me out in several schools and aged five they placed me in the local village school. I am not sure it was successful. It was a very middle-class area and having your child sat next to a ‘drooling spastic’ did not go down well.

I used crutches in the playground and ‘hit me with your rhythm stick’ was number one so other pupils asked me to hit them, the teachers were not impressed.

It was ‘decided’ to move me to a ‘physically handicapped’ unit at a mainstream school at a neighbouring town. It was good and mostly coped with me.

The headmistress once told me I need to work twice as hard as anyone else to get on in life, something that stuck with me. She was right, but at 45, I am now suffering the price I paid.

Now we have the main event, going to an all-boys mainstream school. If you remember ‘only gay in the village’, this was ‘only spastic at school’. It is so hard to explain how much discrimination I faced. I was bullied endlessly for five years which the headteacher said to myself and my parents was a part of my education. The worst thing the school did was to tell other pupils to treat me ‘normally’ as they then resented the special equipment I had.

It is essential to understand as a teenager in a spastic body, I did not understand what was happening. For the first three months at regular school I cried myself to sleep as I was so confused.

I did not understand I was ‘disabled’, a discriminated person until I was 17. I know I was different, but I suffered from what I call ugly duckling syndrome. I had no cp peers, so I did not know who I was. Plus I was gay which I did not understand until I was 21.

6th form college was a breath of fresh air, and I could start to be myself. I lived in the computer room and once with their permission-ish ran up a £600 phone bill using the internet. I loved the freedom, and I was proud when the college put on a play I wrote on my experiences at school called Normality, which is a very complex issue.

College was a time when I was very normalised and automatically conformed, denying myself using equipment that would help me. At school and college, it would have been useful to wear a helmet in case of falls, a bib/apron/smock at lunchtimes and certainly a boilersuit for pottery.

The early 90s was a time when everyone went to University, so I wanted to go to University, so I did. In September 1992, I went to Coventry University, and in many ways I never left. I am now doing a lot of work as a service user in healthcare and social care issues at the university.

University was the start of being the person I am now. It gave me the freedoms I never had. My course was Manufacturing and Business Studies, and I mostly hated it, but it paid the bills. I learnt much more from the students’ union, and I quickly became students with disabilities officer, a role I held for four years.

The university allowed me to denormalise, to be myself and use the equipment that helps me with confidence. It was a liberating time for me and probably a time I had less stress, no bullying, but I quickly found myself becoming more distanced from my non-disabled peers as I became more myself. I got very involved in the city, Coventry, and became a resident of the city.

I remained very involved with the University in many ways and now train healthcare staff as a service user.

The best decision I made in my life was not to move home but to stay in Coventry. My parents were emotional and physically abusive to me, a fact I just have to live with without malice and moving back home would have stunted my independence. I also had a severely impaired boyfriend to consider.

 

Lessons to be learnt…

I think the first is be very weary on imposing the learning difficulty label as at an early age it can open and closes doors. If you have LD label then you will not get an education so you will have LD and your childhood will be about preparing for adult daycare services, I actually had this told to me very recently as a matter of policy in one council.

The second thing is equipment which is a matter of personal choice. Whether to use a nappy, bib, apron or whatever is a choice, no right or wrong answers. And it can not be about fashion. I personally hate the butterfly harnesses as they offer no posture support, I would much prefer a 5 point harness as the crotch strap provides posture which enhances confidence and intelligence.

I think impairment specific peer support in mainstream schools is also essential. As a teenager you are searching for an identity, and you need to see yourself in others. You would not put a girl in an all-boys school. It took me many years to relate to other people with cerebral palsy. Impairment and Disability are two separate identities. I believe everyone has impairments to a degree, but not everyone is disabled, and society is currently confused by this.

I also believe post-university support for people with severe impairments is very very important, and it needs to be started at the beginning of the final year. I have seen too much talent lost because people go back to their parents as social care does the basics if anything and they just disappeared. Society does not care if I work or not, so I had to fight hard to accomplish what I wanted. This attitude needs to change.

 

Summary

 

It is essential to reflect on the history of special needs education. In 1910 a law was passed requiring us defectives to be separated for genetic concerns. Charities led in the building of special schools which were an innovation of their time.

I recommend watching or reading Skalligrig, which is a powerful reflection of what it was like to be disabled.

Also, important to note I did not have a legal right to an education until 1981 when I was 7. These were the dark ages of special needs. I am still amazed I coped at school, I was so isolated.

Being ‘disabled’ in the 80s is very different from now. I had to wait outside shops in my buggy or wheelchair, and once a parent pulled a child away from me saying ‘you might catch something’.

With all this said I had lived very well, and I am grateful for the education I received as well as the social skills. I may sound bitter to some readers but it is an honest reflection.

If you like my blog article, have a look at some of my products;

Achieve Support – https://www.simonstevens.com/achievesupport
Having Pride (My Life Story) – http://www.balsy.me
Stevens’ Manifesto – https://www.simonstevens.com/manifesto
Understand Assistance – http://www.understand.tips
Understand Dysability – https://www.simonstevens.com/understanddysability
Understand Inclusion -https://www.simonstevens.com/understandinclusion

or visit my website at http://www.simonstevens.com

Donations are always gratefully received via paypal at https://www.paypal.me/simonstevens74
You can also email me at simon@simonstevens.com
or follow me on Twitter at @simonstevens74

I hate paper straws

There are often mainstream everyday products which can assist various people with impairments with specific needs. Deliveroo and online shopping, as well as banking, are perfect examples of this as technology has assisted in the inclusion of people with impairments.

While these solutions are likely to stay for a long time and keep improving, some solutions come in and out of mainstream fashion, where there is no regard for how they assist various people with impairments. My first personal experience of this was Velcro shoes.

Due to my hand control and general movement, Velcro shoes are easier to put on by myself and allows me to be more independent as it is impossible for me to tie up laces. However, the availability of Velcro shoes in adult sizes in mainstream shops over the years has varied widely without any logic, but that is fashion.

When Velcro aHhre out of fashion my only option would have been to have gone to a specialist provider, thus paying the dreaded ‘disability premium’, the extra amount people with impairments have to pay because it is a ‘special’ solution. Nowadays, I wear mainstream slip-on shoes, and since I now only use a wheelchair when I go out, they have lasted many years, more than when I was walking.

Currently, there is a much more significant concern, which is the end of plastic straws in preference to paper straws in restaurants and other places in a lame effort to ‘save the environment’. The idea is not just a fashion that has spread across the hospitality industry but a commitment by the government to ban plastic straws except for medical purposes. This could mean people with impairments requiring plastic straws would literally need a license to purchase them.

The problem is the current design of paper straws is awful as the ‘mouthpiece’ quickly becomes squashed as the straw becomes a soggy mess which reminds me of the one time I had a puff on a cigarette on my 19th birthday! When straws are the only solution for drinking for many people with impairments, we can see how there is a policy conflict between accessibility and protecting the environment.

One way to resolve this is to improve the design and durability of paper straws, and I do not know anyone who likes them, impaired or not, but this will take time. In the short term, people with impairments will need to bring their own plastic straws they have purchased while stocks last. I have already pre-empted the situation by buying 1000s of plastic straws to last me the rest of my life.

I do already bring straws with me when I go out for hot and cold drinks I have in my special cups. It is for iced beverages at McDonald’s, Starbucks and so on that using the straws provided was useful, and paper straws have harmed my enjoyment of the drinks.

How plastic straws has become a massive part of the war against climate changes bemuses me and along with the middle-class protests demanding the ridiculous with no evidence, means people like myself are going to be put off the issue, especially when the impact on people with impairments and others is not considered.

 

If you like my blog article, have a look at some of my products;

 

Achieve Support – https://www.simonstevens.com/achievesupport

Having Pride  (My Life Story) – http://www.balsy.me

Stevens’ Manifesto – https://www.simonstevens.com/manifesto

Understand Assistance – http://www.understand.tips

Understand Dysability – https://www.simonstevens.com/understanddysability

Understand Inclusion -https://www.simonstevens.com/understandinclusion

or visit my website at http://www.simonstevens.com

 

Donations are always gratefully received via paypal at https://www.paypal.me/simonstevens74

You can also email me at simon@simonstevens.com

or follow me on Twitter at @simonstevens74

‘Blue badges for all’ is a bad idea

Blue Badges, or disabled parking permits, have existed for almost 50 years, and are recognised around the world, nearly as much as the wheelchair symbol. They were designed to allow wheelchair users and people with other mobility impairments to use often specific parking spaces in car parks, usually closer to the buildings the car park associated with. It remains a logically and reasonable adaptation to the built environment for this purpose.

This year the UK Government has decided to extend the Blue Badge scheme to people with so-called hidden impairments like autism, dementia and ‘anxiety’. I say so-called because, in reality, these impairments do show visible signs in terms of behaviour. The government’s decision is likely due to pressure from charities and others to provide people with mental health issues access to services and benefits designed for people with physical impairments as a symbol of equality without any understanding of the consequences, as opposed to developing services uniquely suitable for people with mental health issues.

As someone who has both physical impairments and mental health issues, I would like to use this article to explain why a ‘blue badges for all’ approach is a bad idea for everyone involved.

The first problem it creates is obviously one of demand and supply. I am not sure how accurate this statistic is nowadays, but it used to be said that only 8% of disabled people are wheelchair users. If you are doubling or tripling the number of people with blue badges, then the demand for accessible parking spaces increases. If the supply of spaces is not increased, then potentially wheelchair users are being excluded from spaces that were designed for them with extra space between the cars.

If the supply is increased to 20% or more of a large supermarket car park could be made up of disabled spaces. This means that many of the spaces will be far away from the supermarket’s entrance, which defeats the purpose of the spaces, making a lose-lose situation. It will also become divisive as people fight for the golden spaces at the front of the building.

The second and foremost issue is I believe the reality of parking spaces will not meet the fantastical expectations of people with autism, dementia, anxiety and so on. Blue badges are being sold as a way that individuals and their families can reduce the ‘stress’ of being in a car park as they will be nearer the desired building and so be spending less time in the car park.

I really do not understand this logic because if someone with autism is having a meltdown and has a fear of car parks, a blue badge will not stop this. There is no evidence that car parks affect dementia or blue badges will make it easier.

Then we have stress and anxiety. I absolutely know these are real conditions as I have experienced them myself, and they can be severe enough to be very debilitating. However, these are also terms that are widely and currently abused to describe a bad day and so on. They are terms used to get a sick note without fuss, replacing a bad back, because it is impossible to measure or disprove. This misunderstanding and abuse of the terms, therefore, makes blue badge a prize for those who have moulded themselves as victims of anxiety and stress, mainly as it often results in free parking.

I believe that everyone should be supported in the best way for them. Everyone experiences stress and anxiety to some degree, and it is about having tools to confront these feelings, to reach their maximum potential of coping, as opposed to demanding society somehow removes the stress. However, avoidance is not the solution, as blue badges are now intended to do, and therapies like CBT and exposure, as well as learning other tools, seems more appropriate as people learn to cope rather than being cured or demanding the right to avoid.

Many people with anxiety are resistant to using therapies to take responsibility and own their conditions as they see it as normalisation and an attempt to remove benefits from them by trying to cure them due to the victim culture that exists. They complain wheelchair users do not have to have therapies without understanding many wheelchair users will have had months or maybe years of physiotherapy and other treatments to reach and maintain their maximum potential.

I believe that like how the carer’s movement has gained its power, giving blue badges to everyone is a political decision to keep people happy with an illusion of improvement as opposed to designing and investing in services people really need. It also shows how impairment fashion dictates policy and how impairments who are not in fashion suffer.

If you like my blog article, have a look at some of my products;

Achieve Support – https://www.simonstevens.com/achievesupport
Having Pride (My Life Story) – http://www.balsy.me
Stevens’ Manifesto – https://www.simonstevens.com/manifesto
Understand Assistance – http://www.understand.tips
Understand Dysability – https://www.simonstevens.com/understanddysability
Understand Inclusion -https://www.simonstevens.com/understandinclusion

or visit my website at http://www.simonstevens.com

Donations are always gratefully received via paypal at https://www.paypal.me/simonstevens74
You can also email me at simon@simonstevens.com
or follow me on Twitter at @simonstevens74

Why is it okay to pity visibly disabled people?

People with invisible impairments often complain that they do not receive the attention they deserve as well as not receiving the accommodations to meet the needs people with visible impairments seem to receive automatically. But I believe it is a case of believing the grass is greener on the other side. I am sure there are people with visible impairments who would be happy to swap places with someone with an invisible impairment.

The first thing to understand that is each visible impairment has a range of invisible issues. If we ignore my other impairments and concentrate on my cerebral palsy, everyone sees my bib, wheelchair, helmet, speech impairment and jerky movements. However, not everyone sees I get tired quickly, or I have chest issues.

Growing up, I had to conform to non-disabled standards if I wanted to be integrated as opposed to being included in society, especially at school. This meant a lot of the equipment like bibs and helmets was not even remotely considered. I, therefore, have some sympathy for people with invisible impairments who as a group, are developing their identity and breaking free from conformity.

One thing people with invisible impairments do not experience that people with visible impairments do all the time is pity from others. People talk about the rise in disability-related hate crime, and it is not something I can relate to. I believe each oppressed group is discriminated in their own way. Sexism is about the power of men to control and abuse women. Racism is a fear of black people due to immigration, and the fear resources and jobs are being taken away from white people. Homophobia is both about religious beliefs and the fact some heterosexual men simply refuse to accept sexual identity.

Impairmentism is both about environmental inaccessibility and societal attitudes, which is mostly pity. Pity is many things including undermining someone’s intelligence, treating them like a child, and believing they can never be full citizens as we are defective and this makes them sad.

The problem was pity is it is mostly unconscious and seen as an act of kindness. This makes it hard to challenge without being seen as being unfair as ‘they were only trying to be nice’. For people with visible impairments, they are constantly pitied verbally and with being stared at as soon as they leave their home, and there is no off switch.

I have discovered that the best weapon against pity is humour, as well as proofing your intelligence. This includes wearing outrageous funny t-shirts saying things like ‘I am a drooling spastic’ and using sarcasm, making witty observations with perfect timing. It does not involve telling jokes as they can be learnt and feel false. Humour can shift the power towards disabled people.

It will be a long time before pity is understood as a form of discrimination and has its ‘me too’ moment but it is something we must all work towards.