Increased Expectations of Disabled People

The end of Black Slavery was a great and defining moment for human civilisation, but I have always wondered about the practicalities that a new generation of free black people had to ensure. I would never suggest being a slave was a good thing, but many of them had a good set-up where their meals and board were taken care off. Any institutional environment, however bad society perceives it, has some good qualities, and this is often why people reoffend to go back to prison, an institution that makes them feel safe and secure, with little responsibility.

But when black people became free from slavery, I imagine they had to learn to fend for themselves as citizens and consumers, rather than as commodities, and find themselves housing, a job, and learn to manage money like anyone else. It must have been a great and exciting experience, and also a terrifying one at times as it would be new to them, without the safety net they were used to. To add to the complexities was the fact that while they may be free in law, this did not mean racist attitudes towards them suddenly stopped, and it would be a couple or more generations before racism would not be the dividing issue.

I would like to suggest that this is where disabled people are right now, as the first generation in the UK who are slowly free from institutional care. We are not entirely there as our freedom has not been won outright but I know I am a part of a generation of significantly impaired adults who escaped institutional care, and live ‘in the community’ with support. I live in my own rented flat, pay my own bills, and I am totally responsible for every minute of my day, in a way there would have been impossible a generation ago.

The rights disabled people have secured within my lifetime has meant that there are greater responsibilities placed on many disabled people although not as much as I would like. I believe while I have the moral responsibility to work, society is still happy to write me off as unfit for work if I so choose. But the reality is slowly and steadily, as disabled people gain more rights and independence, society is returning the favour by slowly and steadily having increased expectations of what disabled people’s role in society is.

I believe this is fantastic news, but some disabled people do not see it in the same way. I could discuss the welfare reforms and how they are based on increased expectations, but with the poor delivery of these policies, it is hard to see the wood for the trees and so it is a bad example. But what I do find interesting is some disabled people’s current concern about increased hostility from the general public, what they refer to as a rise in disability hate crime, although I see it as something else.

My biggest complaint about being disabled is not that people are hostile to me, but that they are too kind to me with patronising pity, and believe me people can be harmed by kindness as much as hostility. During my childhood, disability was a taboo subject, the public could not make jokes about disabled people, or even confront disabled people when they did something wrong, because we were regarded as fragile dolls. So I personally believe if the public now feel they can mock disabled people, confront them and actually say what is on their mind, then I see this as a positive step. I am not saying it is nice or fair, but it is a part of being equal citizens and being included into society. While many disabled people may disagree, true equality and inclusion is not the same as having everything perfect.

I am not excusing or justifying the true hate motivated crimes against disabled people, but I am merely suggesting what disabled people see as hostility from other people may just be a part of the increased expectations placed upon disabled people, and this is a price, or a part of the success, however you may wish to look at it, of the equality and inclusion disabled people have achieved.

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Getting Paid is Hard

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It would be argued that in terms of my social network, my experience and expertise, and my political influence, I am nearing the top of my game and I am certainly well known and I think well respected by my peers, despite my controversial nature. The problem I have always faced in getting paid what I am worth and this has been problem made worst by the recession, especially since I am providing a non-essential business service.

 

I could be as powerful as I wanted but that does not necessarily pay the bills, and this is what remains frustrating. Like a sea turtle, I lay my many eggs in the hope one may hatch. never knowing which one that may be, and while I get some work, I am still waiting for that golden egg that will give me enough work to set me up for this.

 

I know I am not the only one in this situation, but that still does not make it very easier!

 

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  

 

Can Disabled People Work Together?

Disabled people are a collective of individuals who have nothing in common other than a label imposed on them by society and being human beings. ‘We’ will experience difficulties, prejudices and discrimination in our own ways and limited by our own experiences, and we will assume every other disabled person shares our experiences, feelings, frustrations and desires. But maturity has shown me that like everyone around the world does not celebrate Christmas in the way Hollywood has made us believe, that disability is a complex map of experience and opinions.

In the past and behind closed doors, from my experience, disabled people working together has been hell, a dangerous cocktail of egos and buried emotions. People often talked about a hierarchy of impairments, including myself, but everyone had their own ideas of where they fitted in. Different impairment groups over the years have strutted their feathers, proclaiming themselves as more discriminated or misunderstood as anyone else, to the annoyance of other disabled people.

While the current political situation in the UK has united many disabled people, it has caused new divisions and new issues of contention. Various impairment groups, who were previously politically inactive for the most part, has been the focus of current government policies and this has meant they have rebelled and often for the first time, become politically identified as disabled people, a process of coming out that is similar to people’s sexual identity. But when a new housemate comes to join the already crowded house of disability politics, its makes Big Brother look dull.

So the past has not been great in terms of disabled people working together, but what about the future? A few weeks ago I had an eureka moment when I realised I could no longer personally let my frustrations about how I felt people did not understand my issues, my impairment or my experiences to stop me working with other disabled people, many whom I have offended in my efforts to be heard, and I am publicly sorry for that. If we are going to build together the brighter future for all disabled people I know we can achieve, I had to start by being the bigger man and offer an olive branch to those I may not always agree with.

I believe that the only way disabled people can work together is by getting personal and learning about each other’s unique experiences, and understand how that shapes our relationship with society and each other. Disabled people need to stop assuming other disabled people, and indeed anyone else, understands or does not understand how they are feeling, and actually share their experiences with each other in a constructive manner, that remains respectful to other disabled people’s experiences.

This is not as easy as it sounds, letting people in without being hostile or point scoring, but I truly believe that if we can build a new collective understanding of impairment as a map of experience and opinion, as oppose to creating a single mythical disabled person, we can lay the foundations to working better with each other, making disabled people a powerful force for good.

I feel social networks, particularly twitter, is a great tool for this process, although for the novice tweeter, it is a forum where the subtlety of opinions can be lost in frustration as I have discovered from experience myself. But if more experienced disabled tweeters, like myself and many others, can support them not to fall into the trap of hostility, again not as easy as it looks, and be the bigger people, then getting to know each other in a new and exciting way is a good start to working together.

With the next election less than 12 months away, this generation of disabled people have an opportunity to move forward and work together to make a positive difference for the benefit of the next generation, and I for one will do my part to make this happen.

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Getting serious

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I know it has been quite a while since I last wrote a blog, and this is because the last few months has been busy as I been preparing things in the background. This has included building bridges with people I have offended in the past because I realised for my benefit of myself, and everyone else, and move forward, working with as many people as I can. I am proud to now consider some of the people I did not get on a few weeks and months ago as friends and colleagues.

 

With my ’Achieve Support’ report in its draft stage, something you will be hearing a lot about in the next few weeks, months and hopefully years, it is time to get serious in my work. I am still working hard to find creditable sustainable paid work, something that is frustrating but I am a very very long way from giving up, and my determination, confidence and drive grows day by day. I am building a powerful informal next generation structure around me that will make it possible to achieve what I desire.

 

So watch this space as I keep my readers posted on the exciting stage of my journey.

 

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  

 

Talking About Disability With Parents

I have found one of the most sensitive situations I find myself is on a professional and personal level is talking to parents who have recently had their child diagnosed as having some kind of impairment, either before they are born, or afterwards. While I am extremely positive about my situation, despite the difficulties I have from having cerebral palsy, I know this is not what these parents want or need to hear at this time.

I have realised that it is very important that parents are supported to have the time to properly grieve for the ‘perfect’ child they were hoping for, because finding out your child has impairments is unexpected news however accepted and included disabled people may become. If parents are not able to complete the grieving process, they will be unable to move on and give the love and support to the child they have. Instead they may become obsessed with non-existent cures and allow themselves to be duped by the promises of an endless supply of modern day witch doctors.

This does not mean I am against operations, treatments or therapies, but I feel it is important that the focus should be on maintaining and improving the quality of life of disabled children and adults physically, emotionally, and as importantly socially. There is little point for a child to be able to walk straight, something other people do not rate as important, if it was at the cost of their education, and therefore their ability to make a meaningful contribution to society.

Once parents have been supported in dealing with their grief, then it is important they are supported to see the many and wonderful opportunities that is currently available for their disabled child. This is the point where they are ready to meet people like myself and see what is possible despite being disabled, or maybe because of being disabled. I have, along with many disabled people of my generation, open many doors to opportunities that their child will benefit from, hopefully without the level of discrimination and battles we had to endure.

Disabled children and young disabled people, as well as their parents, need role models, people with similar impairments to themselves, who they can look up to and respect as people they wish to be like. I am not sure I had any true role models in my childhood and maybe this is why many years ago I decided I had a responsibility to use the opportunities I had to be a role model for the next generation.

I believe social media has also made it easier for people to connect with people like themselves as well as people they respect and even idolise, making all of us as touchable as we choose to be. This enables parents to connect with disabled people and be able to share experiences and understanding, helping to breakdown the fears and concerns they may have through informal discussion and indeed friendship.

It is important that parents have the opportunity to talk about their fears, concerns, hopes and dreams for their disabled child with professionals and disabled people. No parent should feel isolated, one of the common problems with the way health and other services currently support them, or maybe fail to support them. I would always had loved the opportunity to go back in time and give my parents the support they never had since it may have saved our relationship.

And that is a sad reminder of what happens when parents are not supported, a disabled child may grow up with hopes and dreams, because they do not understand their limitations in the way their parents understand them, but the stresses that parents have experienced from unhelpful and unsupportive state services, has caused them to see their disabled child in a very different way to the child will see themselves. This difference of perception is likely to cause a rift in the relationship between child and parents, especially as they grow into adults, making a meaningful relationship sadly unworkable. This is the reason I have felt it necessary to not have any contact with my family, to avoid a relationship made toxic by circumstances and the differences in how I see myself, as a strong man with drive and determination, and how they see me, as that little handicapped boy who dribbles on the carpet.

This is why I have become passionate in supporting this generation of parents of disabled children to have the practical and emotional support to be able to appropriately celebrate the opportunities their children have to succeed, and I sincerely hope some of the next generation of disabled people put me to shame in how they have taken the baton and push the liberation of disabled people to the next level.

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Big Companies Still Need the Human Touch

I think one of the biggest frustrations I have had in my adult life is trying to get the big companies I depend upon, like phone and energy companies, to understand that I am an individual, and indeed a complex individual at that, and that I can not neatly be put into their expectations. I always had the tongue in cheek attitude that their rules do not apply to me because they were never designed with my situation in mind. I am clearly not an anarchist but complaint after complaint, I have repeatedly been David slaying Goliath, proving being big does not mean you are right.

My greatest frustration is when companies, especially those who have made themselves monopolies in all but name, like eBay, do not consider the impact of their automated policies and procedures on people’s lives. I had a friend who was selling disability equipment on eBay, with can be a sensitive business in itself, and the realities of being a disabled entrepreneur with their own issues to manage meant they were not perfect, but they were doing their best and were very sincere in trying to provide a good service.

eBay had different ideas and decided to halt their ability to sell without notice simply because their feedback statistics had been calculated by computer to be less than perfect, but still great and without any negative feedback. Fine, they thought they could appeal but there was no appeal system, just someone on live chat telling them to do better next time despite not offering a second chance. My friend is still looking for another website that provides him with the same quality and flexibility as eBay, but the reality is this venture is dead in the water, and they are left with less income since there is no point fighting a titanium plated wall!

Another example that frustrates me is the big multimedia providers like Sky, BT and Talktalk, who provide television, phone and broadband in one complete package. This sounds a great idea until you have cashflow difficulties and can not pay your bill on a specific month. Now my phone is certainly not as important as it once was, since the only people who ring me are those cold callers trying to politely rip me off, but my broadband is extremely important to all aspects of my life. I know everyone can argue they rely on their broadband, but I really do extremely rely on my broadband!

Trying to explain to these companies that cutting of my broadband would be the social equivalent of putting me in a drugged-induced coma, and in fact without broadband, I may as well be in a drugged-induced coma to avoid the boredom and frustration, is quite a difficult exercise. I understand they want their payment but how can I pay them if I have no broadband. My banking is online, I pay everything online, and I make my money by being online!

I know I can use the phone but because of my speech impairment I require the support of my personal assistants, who translate for me as we make calls on loud speaker. This takes longer and denies me privacy, plus many companies want my personal assistant to be a signatory of my account before they are willing to talk to us, something I am certainly not prepared to do! So having broadband is easier for everyone involved.

I believe that one area of accessibility that is often overlooked is making small changes to company’s policy and procedures to accommodate and be sensitive to a wider range of situations and difficulties, and having the flexibility to make compassionate decisions that can help people in specific situations. This does not mean letting people get away with not paying or pitying people, but taking their customer loyalty and other factors into account to help the situation for both parties.

Big companies still need the human touch to be successful because every great monolithic organisation can have its day, especially if it is not good at meeting the ever increasing diverse needs of its customers.

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