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.

Changing Places should not be used to demonise those who use nappies

A Changing Place is a toilet designed for children and adults with additional toileting needs like those who wear and use nappies or pads as well as having physical difficulties. These toilets often include a bed and a hoist so individuals can have their nappies changed comfortably as well as the opportunity to use the toilet.

Let me make it very clear I support the rise of Changing Places toilets in public places like airports, railway stations, shopping centres, exhibition centres and so on. Places that have a large number of people using them each day.

These are natural places where people like to or need to refresh themselves with food and drink, and using the toilet. It is correct that as there are more people with complex needs being included in society, that their toileting needs are met by more Changing Places.

My concern is when individual shops and restaurants with relevantly low traffic and small toileting facilities, who are also being catered for by larger toileting facilities within the shopping mall or railway station etc, are being bullied with political correctness by parents of children with additional toileting needs to install a changing place, when it is hardly ever going to be used.

The placement of quality changing places, like toilets in general, have to make economic sense. The number of people requiring changing places currently is small anyway. They certainly need to exist but they can become an unnecessary economic burden on businesses that drive up prices in the name of political correctness. It would make no sense to force every wheelchair accessible toilet to become a changing place as there is not the demand.

And here we need to look at the way some parents are campaigning for Change Places, as this is a parent-led movement, and how the demand for Changing Places could be being used as a denial of their child’s toileting method.

Having a child who is ‘toilet trained’ is regarded as an important milestone in their development for many parents. Coming to terms with the fact your child may need to use nappies for various reasons for the rest of their lives can be hard to swallow for many parents.

Toileting can also be a complex issue where nappies are a solution to be used some of the time. I use nappies when I go out as a precaution. There is an individual balance to be made between sitting someone on the toilet and using a nappy. Some people are incorrectly left in nappies and denied toileting opportunities for the benefits of care staff, while other people can be incorrectly placed on the toilet too many times each day to ‘try and go’ when a nappy would be more liberating.

From personal experience, a wet nappy, sometimes with plastic pants for extra protection, is nothing to write home about. A wet nappy that has not overflowed can be comfortably worn going out for a few hours and changed at the next ‘port of call’ as discussed above. If changing places are not used for these natural nappy changes but instead used to try to toilet train children who can not be toilet trained, the campaign for Changing Places could be seen as abusive.

As a child grows and becomes more independent, they may travel aboard and to places where Changing Places are unheard off. If they have not been supported to use nappies as an independent living device because of the fear of parents, their inclusion in society and real lived experiences outside their comfort zone will be restricted. Society should regard wearing a nappy as liberating rather than something embarrassing.

I should say a messy nappy is a difficult affair and one that should be avoided if that is possible. This is about having a positive toileting routine and planning your toileting opportunities when you go out, which is where Changing Places can really help.

For some children and adults toileting can be a complex issue. Parents can be positive enablers in helping children develop a toileting system that works for them, or they can add unnecessary pressure and stress to a child to conform to a method of toileting that does not work for them. We need to support parents to be the former.

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

Observations of a professional hospital patient

Regular readers may have noticed I have been somewhat quiet for a while and this is because I have been in hospital for 3 weeks with a foot infection and liver infection. I thought it would be useful to offer some observations as a professional patient. By this, I mean someone who despite looking harmless to staff actually has a good idea of what should be happening from my work with Care Quality Commission and other bodies.

My first observation is hospitals are not very good at understanding the needs of people with lifelong impairments like cerebral palsy. Staff do not understand they need to establish what is normal for me by asking me, not by making assumptions. Since I arrive in a wheelchair, staff assume I am unable to walk at all, which is not the case.

Hospitals never seem to understand nor accept my lifelong chest issues due to aspiration. This time, despite my endless explanations, they wasted 3 days on tests on my chest as they asked endlessly if I smoked, as if I reached some kind of crisis point, they were even considering ICU!

The second observation is different wards will have different understandings of impairment and people’s level of independence. My stay was spread out across 3 wards. The 2nd ward was a vascular ward, where people’s mobility was strictly controlled by the physiotherapists. With assumptions at its highest, I was force to remain bed bound, disallowed to do anything for myself. It also did not help that lying in bed all time flat is extremely bad for my aspiration! I found this extremely very disempowering, especially as any frustration I had for this undignified situation was interpreted by the cream of patronising nurses as challenging behaviour!

When I reached the third ward, Gastro ward, who were more used to self-care patients, and with the assistance of my personal assistant, I clearly explained to the staff that while I may need some help, I was more independent that people assumed. The message got through and the situation was eased.

The next observation is slightly worrying and that is that nurses generally seem to have a primitive understanding of safe manual handling. On the gastro ward, everyone had to be weighed as soon as they arrived regardless of the time of day, how well they were or how limited their mobility was. Without a hoist or any other lifting device in sight, I used to hear through the often pointless curtains nurses struggle to get patients weighed standing who really should not be out of bed, it was like listening to amateur hour as I closed my eyes hoping I would not hear a fall occurring!

Communication is my next observation and the winner or loser here, however you see it, is the catering staff. The woman who served breakfast in the Gastro ward was not a jolly soul and this was reflected in her communication skills. I specifically remember hearing her ask very loudly and rudely a female patient in a side room 10 times if she wanted sugar on her cornflakes before a nurse had to intervene and tell Ms Jolly to use the pictures I guess were directly in front of her which the patient was using to communicate. This is the same Ms Jolly who demanded a please from the romanian patient in the next bed to me who was really confused and struggling with his english.

The final observation is really symbolic of how hospitals can really miss the mark in terms of dignity. About a hour before being discharged, this jobsworth agency nurse I had not seen before despite now 2 weeks on the ward, made a beeline to me, sat down and softly asked how were my pressure points were, I said okay, now bored with this reasonable but endless questions. Then, to my surprise she asked, assumingly off her own back, if I would mind if she inspected my bottom. Now, this was too far and I politely said I did mind and left it at that. She walked off probably not expecting that response from ‘someone like me’. My point is the number of assumptions she would had needed to make to single me out for her alien probe shows the subtle prejudices I face everyday.

Nothing here warrants material for a complaint but it is worth observing as I believe it shows the rhetoric of hospital policy is not often what happens in practice.

It is time to embrace stress as a mental wellbeing issue

Stress can kill, in terms of causing suicides and the onset of other conditions, and it would be foolish to say otherwise. Stress has and will always exist, and we need to look at how we manage stress in the 21st Century. The first thing you can not do is remove the activities people find stressful, as it is so subjective, although I acknowledge systems like the welfare state could be made easier to avoid unnecessary stress.

Throughout history, stress has been ‘managed’ through vices like alcohol, drugs, cigarettes, sexual activity and now food. These solutions have never resolved the problems causing stress but simply masked the problem, allowing people to temporarily escape themselves. Any period of history shows that that happiness was not the norm for most people, and vices were often culturally mandated.

Over the last century, attitudes towards health and vices have radically changed. As science gave evidence on the physical harm vices cause, ignoring the emotional benefits, vices have been criminalised and/or demonised. We should not smoke, drink too much if any alcohol, not take drugs, and now the food we love is being demonised as we speak. Vices have kept those in poverty or hardship afloat in terms of their mental wellbeing. As society pushed people off cigarettes and towards unhealthy food, we can understand why we now have a big obesity and diabetes issue.

We are now left with no vices for people to take legal and moral comfort in. This means to stop stress leading to more serious mental health issues, we need to radically rethink the toolkit to managing and embracing stress. To do this, I believe we need to make the pursuit of long term happiness a reality for the masses, radically redefining the nature and purpose of society.

Research has shown that long-term happiness, feeling contented with life, does not stem from money or health, but feeling and being in control of as much as their life as possible. I would question how many people feel happy or are even pursuing happiness? It is not about smiling all the time, but a self-belief you are on the road you want to be on. And remaining happy is a job in itself only achievable when people have the right tools to assess where they are and want to be.

Explaining what changes we need in society to achieve this new focus on mental wellbeing as a pursuit for happiness would take a few PhDs, and it is not something that could be done overnight, taking a generation or two to achieve. However, if we wish to solve issues like obesity without simply creating new vices to mask the general unhappiness, radical solutions must be found to how we properly manage stress and offer the opportunity of happiness.

As well as changing the bigger picture, we can all start thinking about what we need to do to pursue happiness for ourselves, looking at all aspects of our life from our employment to our relationships with family and friends, something I have tried to do for many years. It can often begin by acknowledging when we are unhappy and what causes us stress. It can be a long and painful process that may never end, but I believe the pursuit of happiness is something we should all value.

Changing the Conversation on Health and Social Care

We currently live in an environment of label based entitlements. By this I mean many people with impairments feel their labels mean they deserve specific benefits and support regardless of what they may actually need, and with little regard to what having the support would achieve. The fight to obtain the support is seen as the end goal, where what happens next is not considered. This creates passive recipients of welfare, and supports keeping people disempowered and excluded from society.

I would like to change the conversation, moving to a point when people ask for what they need to perform relevant activities that allows them to meet their outcomes. In the spirit of ‘best value’, they may need to explain why one more expensive solution is better able to meet their needs to deliver outcomes than a cheaper solution.

So instead of saying I deserve an electric wheelchair because I have mobility issues, I would say that having an electric wheelchair would allow me to go out to work, and a manual chair would be unsuitable as I can not push myself. It would clearly not be that simple but it gives the general idea.

It is easy to say ‘I need that support because I have extra costs’ but I believe it would be quite revealing if everyone requesting support had to explain what support they feel they required and what they intend to do with that support. Two people with the same impairment labels, like diabetes or depression, may have different needs met with different solutions for different outcomes.

For this way of thinking to work, advocacy would need to be put in place to empower people to understand their outcomes and needs, so they can be an active partner in negotiating solutions from relevant bodies. It would mean a move away from passive welfare and towards proactive and meaningful support,

The greatest barrier to this is the mindset of users, professionals and the public. An example of this is the way ’15 minutes calls’ are portrayed. The public outrage is based on the misguided assumption everyone who requires social care can do nothing for themselves, and are simply passively going along helpless without their ‘carers’. The reality is everyone needs are different and some people may need or even want 15 minutes for simple things like putting their shoes on. While 75% of local authorities may indeed use 15 minute calls, there is no data on the total percentage of users who have them, which is likely to tell a different story.

The other thing about 15 minutes is how they are used. Clearly, if someone needs help with having breakfast, preparing a bowl of cereal, and when the carer arrives they are still in bed halve asleep, waiting to be directed by the carer like a young child, then 15 minutes is not going to be enough. However if they are done as much preparation as they can to have breakfast, then 15 minutes will be plenty of time, possibly allowing assistance with other tasks. Again, it is moving from a passive perspective to an active one.

The system is currently broken but few people are willing to offer alternative solutions. My solution is for us to change the conversation from passivity to proactivity and empowerment.

Sickness and Poverty Are a State of Mind

For many people, Sickness, in terms of people with long term health conditions, as well as Poverty have become the central issues and concerns as a result of this government’s welfare reforms. There is not a day that goes by without some news article or piece of research that explains the apparent woes of people on low incomes and/or those with health conditions. While I do not wish to dispute there are people who are struggling financially, or have health issues which affect their function or quality of life, I would like to suggest that the way someone approaches these challenges and responds practically and emotionally to them is about their state of mind.

Before going further, let me explain my own situation so you understand I am talking from personal experience on both issues. As a self employed person, I rely on work coming in which varies greatly from month to month, especially as I never know where my next piece of work is coming from. I am thankful for Working Tax Credits although as it assumes some level of weekly income which does not always exist, I often have less income than if I was on ESA. This means I have periods of the year where I do struggle and I have to be smart to manage as anyone else does.

In terms of sickness, as well as cerebral palsy, I experience chronic persistent pain as a result of a nerve virus in 2009, requiring four types of painkiller to be taken every day throughout the day. I have bouts of chronic fatigue and lots of other minor issues that I simply manage. While I work, at home a good 40 hours a week as a minimum, there is no doubt that in terms of WCA, I am unfit for work as anyone can be, which just proves to me how flawed it is, in a way opposite to most people assume.

So I am poor and sick by most people’s standards, and yet I feel as positive about my life as anyone can be. I am very rich in my experiences of life and feel healthy as I am happy with my situation and what I am striving for. The usual response to this statement is that I am very exceptional but why? Because I am and feel successful, why is that such a big deal just because I have cerebral palsy?

I would like to propose that for anyone in the media with a sob story about not coping because of supposed poverty or sickness, there is at least someone else in the same situation who are not just coping, but being successful, quietly getting on with it. The middle class and their associated media does not want to hear this, since they prefer to see people appear disempowered and dependent on them, because of poverty or sickness. If people realised that with the right attitude and frame of mind, they may not need the apparent assistance of all these charities, then there would be a lot of well paid charity workers unemployed and actually experiencing poverty for the first time!

While there is some specific need for Foodbanks, they are the fashion statement of this government as they have ensured the unnecessary revival of Victorian values, namely the poor should be dependent on the rich. I fear Foodbanks have made the mind set of poverty popular and that this is just the start of a drastic reversal of the opportunities of social mobility my generation had under Margaret Thatcher. By teaching people it is okay to depend on charity, as oppose to cutting their cloth appropriately, people will never gain the right mind set to be successful.

The same with sickness is happening, as charities and the media wish people to wallow in self-pity rather then gritting their teeth and just get on with it. And I am not saying having little money or being long-term sick is easy, but who said life had to be easy? It is our struggles that make us stronger people and I have never waited for the government or charities to improve my life, as I know the only person who could do that was me!

Poverty and sickness had always existed and I sometimes feel so embarrassed how soft this generation sometimes appears to be. If some charities and indeed disability activists were around when we were living in caves, we would have all been deemed unfit for work and would never have invented fire, being extinct a very long time ago. This is why I am convinced that both poverty and sickness are a state of mind we can all overcome.

– If you like what I say, have a look at my website at http://www.simonstevens.com or follow me on twitter, @simonstevens74

Understanding impairment, health and the social model

NewImage

One of the weaknesses of the social model is that it fails to offer a complete understanding of impairment as an identity and as a practical concern. While many disabled people do not wish to be ‘cured’ of their impairments, they clearly wish to stay as healthy as they are able to and manage their conditions. Therefore some interaction with medical professionals is needed within a social model context, where the goal of utopian cure is replaced my reasonable and practical health management. I would be foolish not to take antibiotics for a chest infection out of some need to retain my impairment identity.

To rationalise medical intervention, it is important to see that any treatment or therapy aims to relieve specific symptoms as to oppose to miraculously cure something broken as nothing in this world can be truly fixed but simply repaired to a weakened standard or replaced. In understanding this, it is possible to see medical interventions in a manner compatible with the social model.

If you like what I say, have a look at my site at www.simonstevens.com or follow me on twitter, @simonstevens74, or even leave me feedback on +44 (0)121 364 1974 or email simon@simonstevens.com

We can no longer wait for cures

I believe there was once, not long ago, the believe by some that there was no point wasting money on accessibility for disabled people because they will all one day be cured. Well, things have moved on and both the money and desires for miracles has gone.

We need to support disabled people right here right now, not only through the accessibility we are seeing being improved day by day, but by improving the way we manage impairments to offer immediate solutions that can improve the quality of life.

The medical profession has softened its attitudes towards impairment and understands its limitations as it learns to patients as partners and not subjects to be cured, and I am glad.

If you like what I say, have a look at my site at www.simonstevens.com or follow me on twitter, @simonstevens74, or even leave me feedback on +44 (0)121 364 1974 or email simon@simonstevens.com

Moving away from the cure culture

There was a time not too long ago when science believed it could cure anything and it was just a matter of time and resources. But as we move science focuses on conditions that are not life threatening but perceived to reduce quality of life, it has hit major obstacles including the fact many people with these conditions do not wished to be cured.

We will never get away from the desire to cure cancer and other big name conditions because of what they are and we had a society and a economic can no longer afford spending lots of money researching a cure for deafness for example. The whole nature of health services is moving away from black and white notions of being well or sick, where health services picked you up when you fall over and fixed you until you fall again, to one of managing long term conditions.

Society is starting to accept the normality of having long term conditions and their management, and I think this is great for the inclusion of disabled people.