I feel I have a voice

One of the things that gets my frustrated and annoyed is when I read news or commentary articles online which I really find inaccurate and helpful to say the least. For example, right now, disabled people are only often written about in terms of welfare benefits when anyone who claims to be disabled in regarded as unemployment.

But in the last 6 months, I am develop how I use twitter and other medians to have my own voice and respond back to these attacks on my humanity. I am making people in stories real to me but not putting them as “people over there” but actually confronting them directly and in same cases building a positive relationship with them.

In this way I feel I have a voice and a desire to change attitudes person by person by challenging people directly, not by criticising them and by making see how inaccurate what they are saying often is. No disability benefit has been ‘cut’, hate crime is not rampant and ATOS does not kill anyone, these are the facts when you go into the detail of what is being said and used for financial and political gain.

I am here to stay and I will say what I see however unpopular it may make me.

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

My disability identity is 100% solid

I regard my impairment and being disabled as two distinct identities. My impairment is cerebral palsy, which is a stable visible conditions which has a strong identity in its own right. I am proud to have cerebral palsy and I have very happy with who are am as someone who will always have cp.

My disability identity relates to the socio-political label of being disabled. I do not have a disability as in line with the social model, disability is external to me and means the barriers I face as someone with an impairment. My impairment identity is ofcourse bigger than my disability identity as I have cp 24/7 but I am only disabled when I encounter barriers.

That said, I feel my disability identity is 100% because when it comes to any legal definition is disability, PIP, WCA, DDA, whatever, I know I am disabled. You just need to look at me to you as I am a level of impairment people would not or could not fake. I acknowledge for some people, their disability identity is not so simple, but this my story.

I had the stability of always knowing I was disabled and which doors that opened and which doors were left closed to me without a lot of effort. Any assessment is a formality in deciding if I am disabled but more importantly since being disabled is not an issue for me, I am get on with living my life and making a positive contribution to society.

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

Why should we get free cars?

Motability has been around for a generation and I feel it is now time to question whether the current scheme is fit for purchase for a 21st Century. Within the raising costs of petrol, the carbon footprint, accessible public transport and the fact many non-disabled people can no longer afford to run cars, it is correct disabled people should get a free car?

I do not think the answer is so simple as it is based on individual circumstances and should be based on individual need not a general criteria. I had a motability car for 7 years but with online shopping and accessible buses, I am now better off having my mobility allowance myself. If I lived in a more rural area, it may be different.

I am worried we are getting to a point where people could potentially eat themselves to a far car by willing mobility problems upon them. I also think the scheme should be transformed to assist a wider range of people like new low income workers from rural areas, families who have frequent trips to hospitals and so on, where the individual need also benefits the social agenda of the nation. Motability should be a helping hand, not a freebie.

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

Lazy independence

I am not quite what some people mean when they talk about independent living. They appear in be quite passive in their expectations of living independently, talking about their rights to make choices and have access to services, without any desire to actually do anything from their independence.

For me, lazy independence is not enough anymore, we have had our honeymoon on political rights and now disabled people must get to work in achieving full inclusion. And by work, I mean any form of contribution to family, community and/or society. This is about attitude and effort, not attainment.

If you want something, and I mean really want something, there is a way to get it and it is up to you to get it, no one else, which includes knowing where to ask for help. For me, this is the cornerstone of independent living, or rather inclusive living, as people take responsibility for their actions, turning their rights into achievements.

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

Choice and control as a right?

Choice and control is regarded as cornerstones to independent living and for the most part this is true. But to argue choice is just a right is incorrect and it is also a responsibility. There is no such thing as free choice because every choice as consequences people must take responsibility for or face the consequences of not doing so.

I worry when people demand the right to the fun choices like going shopping without accepting the responsibilities that go along with them. Shopping requires having money and if people want to go shopping, you need to earn money by working etc. Therefore choice and control comes from participation in society, not absolute human rights, I do not have an absolute human right to buy a specific item especially if I can not afford it.

So a wider choice comes from wider participation and taking responsibility, not sitting at home tweeting a list of demands each day!

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

The closure of the Independent Living Fund

As many readers will know, the government has formally and finally announced the closure of ILF and the transfer of its monies to local authorities. Many charities and activists are crying foul saying it is the end of independent living, saying users simply will be put in care homes without understanding the facts.

The fact the fund has no been accepting applications since before the last general election means that a so-called two tier system has already been created. It amazes me that when it comes to meeting the needs of working aged adults with high support needs, the councils are often portrayed as struggling charities rather than responsible organisations which need a kick in the backside to meet their legal duties. I believe that many council has the using ILF as an easy option and now they need to take responsibility.

What I do not understand that  if the ILF monies is following the users as I believe will be the case, at the start of the transfer, users should see little difference unless charities and activists are suggesting and accepting that councils will be stealing money from users!

I think in the bigger picture ILF users will not be a priority and taking into account the likelihood of complains and protests from life long users and the costs of that, it may be years before many councils looks closely into the issue. It will be when the next government comes up with a new scheme to revamp social care and ILF users are normalised into that, that users may face cuts.

The issue now is to ensure the small print of the transition is futureproof as recognises the support needs of users as well as their care needs.

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

Lets help the patronising

One group of people which has been forgotten in these hard times is the patronising. This awful incurable emotional disease is clearly on the rise and can affect adults from all backgrounds at any time without warning. Suffers feel uncontrollable urges to say things they should not, causing offence when none was intended while people around them do their best to sympathise with them.

I do not know yet on any charities helping these poor helpless souls or any research into this disease. There are no drugs to relieve the symptoms or so far so there is no treatment or therapy to assist their situation. What is more worrying is the increased in unreported hate crime against patronising people by disabled people and other groups who no longer tolerate their outbursts.

I believe it would be very helpful if more famous sufferers, like Ester Ransom and Boris Johnson, came out and campaigned for medical research to prevent patronisation. I also believe the government should set up a commission to look at what services are needed for these growing infliction.

So while disabled people may be having it hard, it is important we remember how hard it must be being patronising.

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

NB: If anyone is totally confused, this is a humorous article with some degree of truth to it!

Moving away from compensation payments

I feel that to get closer to the true inclusion of disabled people within society as contributing citizens, we need to move away from the current arrangement of compensation based payments and replaced with more personalised outcome based needs led payments and/or services.

By compensation payments, I am referring to DLA and its successor, PIP. The assessment is in terms of whether you qualify for a level of benefit at a specific amount. For some people, this will be a drop in the ocean to what we need while for others, it may be far more than what they really need, especially in the long term.

Because DLA/PIP is a random amount, it quickly gets swept into a person’s general income and there is no incentive to spend it to “personal independence”. I therefore because everyone should get what they specifically need when they need based on their specific situation, not some rights based common denominator. 

Some people may need a lot of support for a few months and than very little. I also strongly believe payments MUST be based on outcomes. I mean it is not about your right to go out, but to be support for the specific trips you need to do for work/education/family/leisure. You need to need based on meeting outcomes not based on some notion of rights. The right is the responsibility to meet your outcomes.

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

Walking 20m

As some readers may know the government has slipped in to the new Personal Independent Payments regulations that people will need to being to ‘walk’ in a reasonable fashion from 50m to now 20m. The activists are ofcourse having a field day as it gives them yet another reason for their medical model sob stories.

I do acknowledge the government has been naughty but I think it is about trying to create a culture change. While people go on about ATOS being horrible, it is still an assessment based on asking questions and therefore it is about self assessment to a degree. The assessor is looking for a geniousness of the facts, they can no scientifically measure how far people can walk. 

The problem I think the government has with 50m was obesity and the possibility anyone who gets out of breath was be entitled to a free car in this era of weak political correctness. So rather than people having a taking responsibility for their weight, they have a legal right to eat themselves into a free car.

I feel people can no longer be assessed on the face value of entitlement without having to take responsibility for their health and social contribution. The medical professional spent 16 years of my life when I was growing up to get the most of me before reaching a point they knew no medical intervention would help, leaving me to develop myself socially. If you are obese, loss weight, you choose to be disabled by ignoring your mental health issues!

So if the 20m regulation is here to stay, and I do question that as political correct weakness sets in, I wish people would just get on with it rather than scaremongering those who will not to effected to the point of suicide, for their personal interests.

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

The warehousing of the ‘severely’ disabled

Before Christmas I was reading a ridiculous article on the web about a family carer of an adult child who was complaining about the benefit cap and how as a carer, she were not exempt. What I however found more concerning was my many comments and the general rationale for why she should get my money.

The basic argument was it was that of course she should get her money because it would be cheaper than putting him in a care home. This really puts in the reality how people see disabled people who need ‘care’ as “severely disabled”. And this mindset still exists amongst many so-called disabled activists and well as the charities who regard the Independent Living Fund as money to “keep” people in their own home rather than in care homes.

It is clear there is too much focus on simply warehousing those considered even by people claiming to represent them as too disabled for anything else. When the government talk about independent living, I fear they just mean deciding how many sugars you have in the tea made for you or the colour of the walls of the cell/room you live in.

We have a long way before many disabled people are seen as capable beings who can lead as normal lives as they choose, even by many ‘disabled people’ who often have no clue.  

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