What can disabled people and others wear for dinghy sailing?

I have always believed in people should wear the right kit for the right activity, and dinghy sailing in no exception.

One of my pet hates is disabled people and others bring put in dinghies, canoes and other reasons in their street clothing with the promise of not getting wet. There are two reasons for this. Firstly, if you do get wet or capsize in street clothing it could seriously harm your health, especially if you are prone to chest infections. Secondly, half the fun of dinghy sailing is getting wet by splashing or capsizing or what is the point?

We need to assume the activity involves the chance of getting wet and so appropriate kit should be used. It is often a matter of personal choice although organisers may have requirements on what to wear.

The first decision is whether you use a wetsuit or drysuit, which may depend on the time of year or simply your preference. One or two piece full waterproofs are another option although they could be unhelpful if you capsize.

Wetsuit come in many designs and thicknesses to suit different activities at different times of year, and mostly grouped into full 1 piece back zip suits, two piece front zip suits, and shorty suits.

If you are prone to the cold, you may find the suits you can borrow from organisers do not give you the extra protection you may need and so buying a wetsuit to use for sailing and other activities may be useful to feel warm, comfortable and safe.

After many years of personal research by purchasing a range of different styles of wetsuit, it seems the best kind of wetsuit design for many disabled people is a beavertail wetsuit. This consists of waist height trousers and a full jacket that has wide ‘flap’ that goes between the legs like a crotch strap. The fastening of the flap, the beavertail, can be velcro or metal twist locks, the later can be useful if you have hip thrust issues or just want a secure fastening. The beavertail avoids any unnecessary exposure of bare skin at the waist and the suit being flooded by water.

This type of suit is seen as old fashion and unpopular but it can practical for many wheelchairs, Most of the suit can be put on in a seated position and then just require a short stand or lie down to pull the trousers up and fasten the beavertail. A typical one piece back zip wetsuit will require a lot more standing time and plenty of struggling.

The next issue is what to wear under your a wetsuit. A wetsuit works by being wet and using your own body heat to warm the captured water, and so keeping you warn.

The best thing to wear under your own wetsuit is nothing. If it is a borrowed suit, for males, speedos or other tight fitting clothing is a must, shorts will be uncomfortable under what is a skintight suit. For females, a swimsuit is suitable. If you have continence issues who may consider a swim nappy with plastic pants if you are comfortable with that.

In terms of footwear, you can never go wrong with a good pair of wetsuit booties as being barefoot is not a good idea, especially those with sensitive feet. An alternative is an old pair of trainers without normal socks although there is the option of neoprene socks,

There are two issues for headwear. The first is warmth. A full wetsuit hood may be over the top but you may consider depending on the weather a neoprene skullcap or silicone swimming hat. The second issue is protection, which means wearing a helmet for various reasons. While it often a matter of personal choice, if your movement or understanding is limited, a helmet is a very good idea,

Another option to consider waterproofs over the wetsuit to deal with splashing and rain, and there are two main options, The first is an activity specific waterproof top with neoprene cuffs, neck and often waist called a cag. The second is a lightweight one piece waterproof with neoprene cuffs called a spraysuit.

The final item is a lifejacket, which has to been worn whatever you think, and ideally, they should be fitted with a single or double crotch strap. While crotch straps are often unpopular, they stop the jacket riding up and so without the crotch strap they become useless as opposed to useful.

The alternative to wetsuits is the drysuit. This is a thick waterproof suit a tight latex neck seal and cuffs, as well as built-in latex socks, designed to actually try to keep you dry. It can come with a heavy front diangle zip or a horizontal back zip. They can come with built in gloves and a hood. It is a hard suit to put on,

Under the drysuit you can wear your street clothes, traditional thermal clothes, or a specialist one piece thermal suit called a woolly bear. Since a drysuit is time-consuming to take off, especially if you need to come ashore, regardless of your continence status, you may consider wearing a nappy or pull-up as well as plastic pants to avoid your drysuit socks being full of urine.

In summary, the articles offer many of the options to you on what to wear for dinghy sailing. It remains a personal choice but hopefully now an informed decision. I hope like myself, you have the opportunity to try dinghy sailing in a safe and comfortable way.

This is my life

This is potentially the most important article I have ever wrote.

If you are reading this then I assume you know a little bit about who I am.

On paper, I am an internationally respected disability consultant and activist, and its a title I find humbling as I am just being myself its something I can not switch, if I see wrong I fixed it regardless of my health status.

I can now complex cerebral palsy with mental issues, and alcohol dependency. I am no saint as I am deeply disliked by those with minor impairments in the left wing movement, I could say a lot more at this point.                                                                                                                                                                                                                                                                                         .

I am lived with a lot of stuff and I took up every opportunity providing to, ignoring the fact most of them were deemed impossible to do. What I achieved would take a long time would take many words to explain.

I was supposed to die at birth or be a cabbage, not the hyper-intelligent drooling spastic I am now. My whole family could not handle my hyper-intelligent and we parted in my 20s leaving me to fend for myself. My brother once complained I was acting too disabled!

The heart of the matter was in November 2019 when a normal chest infection turned into utter mayham. The facts currently remain unclear but my current understanding is my heart stopped and I was in an 11 day and 2 day coma I only discovered this  when weeks later I properly read discharged now.

This month I spent ten days in Hospital with ‘a mostly normal chest infection’.

It is both helpful and scary when half the staff know me.

So a week out of hospital, dealing with emails like a game of Hungry Hippos, I am sitting here sad pondering what is next.

My council has really step up to there plate which I appreciate it as I am been very emotional and I cope by emailing how I feel. I was recently asked I had any downtime and its are you kidding, my activism is 24/7.

So the future, I got no idea anymore. There is no organisation anymore that represents people with cp and I still demand Scope to represent us instead of the politically workshy (oh yes,  you can quote me, Corbyn would had made Hilter look like Mary Poppins!!, NHS few steps away from being a mass killing machine and its run by namsake).

I am not annoyed but I am confused and upset. Much of my identity will be lose in hospital as they will never be seen in my achievements large and small. Even in hospital I am inspiring the staff by being there.

I simply hope this articlw helps you.

Hospital and Identity


I have written a number of articles in recent times about hospitals and this one could be regarded as the dessert.

I should explain I am not annoyed at hospitals; the staff work hard and do their best. However, when you are a complex user, it remains difficult due to no one fault.

I found identity is an issue in hospital. Nurses often see just a patient in a bed and when you look like someone has having sever learning difficulties it makes live interesting.

The reality is a matter fact I have somehow become an internationally hyper-intelligent disabled activist, which sadly has no meaning when who have just a gown and ‘pad’ on a hospital bed.

I have cerebral palsy, basically brain damage due to a lack of oxygen at birth. The condition can vary considerably from a mild limb to very complex needs, and I am somewhere in the middle,

My first issue is paramedics refuse to take wheelchairs despite them having a legal responsibility since 1995. The local manger stared at me blankly as I pointed this out.

So, no wheelchair changes the game. I am now bedbound and therefore double incontinent which means wearing and using pads 24/7, and likely a catheter. My identity is now compromised.

I have produced an inclusion passport which is an illuminated booklet about what I need about hospital. After writing over five            versions in two years, this document has been a lifesaver, but it can only so far as I am still a patient in a bed, and a retarded looking one at that.

I look around the wards at 45 as I did in my 20s. I often remain the youngest as I see them as fragile old men as they see me as a young drooling spastic. We all have identities and stories that get lost in hospital.

Staff are focused on our medical condition that becomes our identity, often without taking our social background into account. The staff can often consider your condition new, when in my case it has been lifelong, so you get despaired by their overreaction to something you dealt long before you was they were born.

In my last hospital visit a physio insisted I prove I could walk before I was discharge despite being mostly a wheelchair user. I met this challenge with boredom, irritation and wanting to ‘have words’ when she felt so happy that she cured me (not)! It reminded me of the idea of a blind man going into hospital to have ingrowing toenail removed and then being told he could not be discharged until his sight got better!

Our health is a small part of our identity, but the rest of our identity can not be lost. I know it is hard for staff to obtain backgrounds in a busy ward but its an issue that needs consideration.

Hospitals and Eugenics



As an internationally recognised disability consultant, trainer and most importantly, activist, I have always strongly opposed all forms of eugenics.

In 1995, aged 21, I was endlessly watching about parents wanting to kill their young son with cerebral palsy and in frustration I rang the news service, ITN, demanding they interview me, and they did! So that evening the UK saw a young drooling spastic putting his foot down on an issue he remains passionate about.

I oppose infant euthanasia or ‘mercy killings’ as everyone has a place and purpose that has to be valued as it may be unpredictable in what is achieved.

I find the idea of someone with an impairment label who remains healthy requesting that state assists them on a date they chose to commit suicide as a selfish and immoral act. Dignitas in Switzerland is no better than a Nazi gas chamber.

Where my views become grey is in terms of true end of life care. I was always for ‘do not resuscitate’ until I understood the damage it can cause when sat on a research committee.

End of life means to me people who are facing death where there is no hope of recovery. I believe in his situation, as activists, we should be respectful.




I am 45 and have significant cerebral palsy that affects all my life, specifically my speech and mobility. I also have mild bipolar, nerve pain, asthma and likely stuff I forgotten.

My curse is being hyper intelligent in a spastic body. Imagine thinking like Sherlock Holmes and looking like you have severe learning difficulties. My master weapon is my words in emails and articles which I call my art.

I have been a disability consultant, trainer and activist most of my life, something that has been natural to me. I remain amazed at what I have achieved and the opportunities I had, like this article. But my best achievements have been helping others in small ways no one sees.

My highs have been matched with my lows. Abusive parents, bullying at normal school, periods of depression and very ill health.

At 45, in a body doctors do not understand, my health, which has included 2 times in critical care in 2019 with two comas, has led me to reflect.


Meeting Death


In this section, I am going to discuss death as a metaphoric man.

I first met death during my birth due to brain damage from a lack of oxygen. In another era I could easily be still born. The doctors told my mother I would only last 3 days or be a ‘cabbage’, yet here I am at 45 as someone who considered inspiring.

The second time I meet death was when I was 33 when I had the symptoms of Gullian Barre Syndrome. Due to my cerebral palsy, which can a varied in severely for each person, it took a few weeks to understand, when I was now paralysed from the navel it was taken seriously, as I demanded the paramedics take me to hospital despite their protests.

When the appropriate doctor saw me, her jaw dropped as she understood the severity. That night I was constantly monitored by a nurse as I was administered life-saving medicine while death watched in the corner. It took 2 more weeks in hospital and six months intensive physioterrorism until I was restored to myself as a drooling spastic.

I always understood as someone with now complex health issues that my lifespan would be shorter.

I do not fear as death as I lived so well. I value the opportunities I had and the norms I have broke.

At 45, and during the past year, my health has involved talking to death I am unsure what is ahead.

I feel death has now confirmed when and how I will die and that’s fine because I really lived. I know he will never disclose the details to me, and I find my survival this year interesting.

I feel it is wrong to try to shorten or prolong your life from what death as in mind. As someone that been close to death too many times and did not know until 2 weeks later when his personal assistant told me that I was in a 11 day coma followed by a 2 day coma, I remain confused to how I survived.




So now, we discuss the heart of the matter.

I will discuss my experiences of UK hospitals although I have been unwell in Nigeria (my first overnight admission due to gastroenteritis aged 20 and yes, wtf) and Prague (just food poisoning).

In recent years my visits have been more frequent and more worrying, My chest in constantly impaired although it is hit and miss to how hospital treats it. One time it could result in a coma and intensive therapy, another time I am told at 4am clinging on the trolley trying not wet myself, knowing asking someone for help as ‘in a minute’ pointless, to go home.

Hospitals are the worst place to be unwell in which is ironic. The first problem is the paramedics refuse to take my manual wheelchair, let alone my electric chair, forcing me to bedbound and by default double incontinent which is unpleasant when staff have not earned your trust has to change you.


I find hospital a harsh environment where politeness is the only form of control I have to manage my situation has as someone assumed to lack intelligence, any hostile behaviour will mean labels are placed on me. I need to just lie here and take mental pictures for the email complaint I will write when I am safely in my own home. I often stare at people quietly thinking to myself they have no idea what mistakes they have made and who they are addressing.

If you think as one friend recently put ‘you are the toughest person I know’, hospital must be hard work for different people with different situations. For myself, nappies/diapers/pads are a normality and employing personal assistants for 27 years allows me to accept a lack of privacy. For others, it will be the first time they have experience such difficulties.

Therefore, their experiences or fears of hospital may attract them to assisted dying to avoid the humiliation to themselves and their families we can not ignore. I have been in situations where a stiff upper lip was needed as four nurses were needed to change my dirty pad.




As activists, we should not berate those individuals asking for assisted suicide as they are often being used by specific charities to promote the cause. On the other hand. I am against senior disabled activists who clam to support our existence but reject a government committed who believes disabled people can make a contribution in society, openly preferring we were left on the scrapheap while the left wing organisations demanding to represent us drink champagne funded by the government.

It is interesting that during the last time the parliament had a vote on assisted suicide Cameron’s Conservation government’s cabinet, who by many activists saw as the bad guys, were instructed to oppose the bill on a free vote. I was pleased my Labour local MP came and talked to me in a lobby (supposedly part of the good guys) at Parliament House until he refused to look at me in the face and tell me I had a right to exist. It still hurts as it was a simple request.

I leave this complex and personal article with two requests.


Firstly, lets accept everyone has a right to live and be fully contributing citizens regardless of their background or abilities. We need to focus on inclusion and accessibility in all aspects of society instead of rights and entitlements that are label based. Everyone deserves to have their personal needs and outcomes to be supported appropriately as their life changes to help avoid the frustrations that lead to suicidal desires.

Secondly, we need to all work together to make hospitals friendly and safer places that no one fears. This is a part of understanding their always forthcoming death and own it, without trying to bow out from the date set by a higher power planned.

I have felt suicidal a few times due to my environment at those times. While it may be strange to some, I don’t want to be ‘cured’ as it would be a distressing event where my identity would be lost, that may take months or years to recover from.

I hope my rumblings offers a very personal experience of eugenics to contribute to the discussions needed.

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.




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
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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.


Assisted Suicide is Complex

I am 45, I have cerebral palsy, mild bipolar, nerve pain and asthma, plus I am gay. This is all relevant as I will explain later. I am also hyper-intelligent and a leading disability consultant, trainer, researcher, advocate, activist, actor, comedian and so on. I have faced a lot of discrimination and abuse all my life but I lived very well as someone with an unsupportive and even abusive family.

I used to be 100% against assisted suicide for the most part still I am but I learnt its complex. I have felt suicidal at times and it has always been environmental, often when I have been forced to stay in bed when I could easily been put in my wheelchair like in hospital. I aspirated all my life, which means food, drink and drool goes into my lungs and if that goes stale I get an infection, sitting upright reduces this but my hospital does not understand this. I can’t cough properly so I need to retch sitting upright. If this is denied to me than I get distressed.

Important to note at this stage my home is perfect for my needs. I do employ personal assistants but with the wonders of technology, I am very independent, and it annoys me healthcare professionals assume I need 24 hour care and I am ‘retarded’.

In terms of assisted suicide, we firstly have what I will call arrogant assisted suicide. These are people who have an impairment label who have few actual symptoms and they desire a doctor to kill them on a specific date in the future. This is about legitimising which their religion regards as a sin, considering the idea of being a burden on family. This kind of suicide is completely wrong as its based on how they may think and feel in the future.

Due to a nerve virus I have been truly bedbound for 4 days until I had a hoist fitted. Living upstairs I was then housebound for 10 weeks as someone with a nerve virus having rehab on top of cerebral palsy. While I was in control of my daytime support, I hated overnight care. I went through 3 care agencies in 3 months. It required a lot of determination to cope with the abuse I was coping with. I felt suicidal when the staff were instructed not to help me out of bed. This was a period when I sat for hours on my commode using my computer to feel safe.

This is when the environmental factors of suicidal desires can be considered. All suicidal desires are environmental, people can feel trapped, and its sorting out their environment as well as moral support. It is not easy as ‘we’ need to establish the existing or imagined needs someone with suicidal thoughts is concerned about and resolve them to their satisfaction.

The second form of ‘assisted suicide’ is the mercy killing of children who are considered as having a ‘poor quality of life’. I am talking as someone who was predicted to live 3 days and when that failed I was going to be a cabbage, not the leading disability consultant I am now. And my level of cp is quite mild but decreased with aging.

My kinda boyfriend is very impaired with cerebral palsy, he can not talk or do anything physically for himself but he has an excellent life. The world would have a hole in it without him and I would be without a soul mate.

Where assisted suicide is complex is end of life care, when people have a few days or hours to live. I lived in chronic pain for ten years and it becomes confusing, they ask you to describe your pain and its like a life story.

The reality is assisted suicide in these situations happens around the world on a case by case basis already but I believe it can never be defined in law. Do we have the right to prolong someone’s death when their dying when they are in pain because of politics? I don’t know the answer.

Assisted suicide means different things to different people. We live in a volatile political environment where even in the UK, under a left wing government, the building of gas chambers for moral and economic reasons is a real possibility.

Assisted suicide must be opposed but at the same time the risks to suicide and end of life care must also be improved.

The welfare state should act as a trampoline

Because I am openly centre-right in my politics it is assumed by my critics that I somehow do not agree with the welfare state. The truth is actually quite the opposite, I believe however the current system promotes passivity that is extremely unhelpful, and it should be radically changed to enable and empower people to get back on track and be the best versions of themselves.

Everyone can have one or more episodes of difficulties in their lives for a whole range of reasons. This should be accepted as a part of life but what is important is how people respond and supported to overcome their difficulties. Money should only ever be seen as part of the solution as more direct support should be provided to remove barriers and when needed, to provide training on how to manage lifestyle issues.

I am aware that many disabled activists as rebelled against the idea of a more proactive welfare state. They regard employment and other support as an attempt to deny their impairment status and assume they are unfairly ‘fit for work’. The notion of ‘fit for work’ is an unhelpful one that assumes a 2 tier status of citizens. Instead, I regard that for those unable prepared to immediately obtain paid employment, they are somewhere on the pathway to obtain paid employment even if the goal is unlikely to be achieved, which is something no one can predict.

Impairment may indeed never be cured but it can be managed, which means people can reach a stable understanding of what they achieve including reaching an emotional acceptance and even happiness with their situation. Reaching this point is likely the hardest part of the process and something the current system does not assist with.

The decision to move away from seeing people needing welfare assistance as passive is a politic sensitive one because it is a fundamental difference between left wing and right wing politics. The left wing appears to see welfare as just a right, while the right wing also sees it as a responsibility.

The solution to the welfare state required is more advanced than this current era of politics to understand and may be hard to sell to those needing welfare support in an era of rights and identity politics. Support has to be available to meet what individuals need to fulfil their outcomes, not as compensation people ‘feel’ they deserve because someone self-defines themselves as having an impairment label despite the label having no relation to what they actually require.

The state should desire citizens to be less dependent on them as far as possible as good governance although it may hard to sell to claimants who see things differently. It may remain a system which is perceived toxic whatever happens.

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

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