Concerns in the light of Brightons' own Golli-gate

It is my intention to send a copy of the following to the CEO of Brighton & Hove City Council, Penny Thompson CBE. If you wish to co-sign this letter, please contact me at mimseycal@mail.com.

In addition I am preparing another letter to the same addressee with regards to the closing of the Hearing by the Standards Panel. The secrecy surrounding the hearing is concerning for two reasons.

• Due Process and Procedure requires that reasons be given for invoking the mechanism that allows for the closing of a public meeting to members of the public and press. No reason was given though the mechanism for closing the meeting was given as the reason. This now means that the precedence for declaring all meetings, ostensibly open to the public, as closed purely on the basis of quoting the mechanism is now established.
• The Public cannot scrutinize a decision that was reached in secrecy, behind closed doors. Considering the strength of feeling, as evidenced by the various responses to articles on the subject in the Evening Argus, it is clear that the public does want to be able to scrutinize the reasons behind the conclusions reached by the Dawn Barnett hearing on 19th December 2013.

I will put that on this blog in due course.

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Dear Ms Thompson,
I would ask that you consider the fact that the BMEWF is a workplace forum open only to employees of Brighton & Hove City Council. Membership of this forum is not possible for any person who is not employed by the City Council; with neither agendas, minutes of meetings, its membership list nor the composition of its Steering Panel being open to public scrutiny.

I hold that the BMEWF has grossly overestimated its remit. Ms D. Barnett is not an employee of Brighton & Hove City Council but an elected representative of residents of this city. It is therefore not appropriate that the BMEWF go to the extent of placing a complaint against Clr. Barnett unless she acts directly against the interests of working conditions.  
Further, the refusal of the BMEWF to consider any resolution aside from a Full Panel Hearing, including its refusal to consider any meeting with Clr Barnett until after said full hearing lays the BMEWF shows a level of intolerance, segregation and lack of conciliation that does not sit well with the concept of a multicultural community.
Enclosed you will find the reasons for concern as highlighted by the conduct of the BMEWF. As CEO of Brighton & Hove City Council I would request you ensure that the BMEWF engages to ensure that it does not overstep its remit in future.
Respectfully,

Having read all the documentation provided for the now deferred Standards Panel meeting 28 November 2013 there are some grave concerns regarding the position adopted by the BMEWF. The context being that there were three complaints from private individuals.

• Mr D. Hermitage – who requested that Cllr D. Barnett be placed on an Equality & Diversity Training Course.
• Mr T Read – who requested Cllr D. Barnett undergo Diversity Training and provide an apology for her comments.
•  Mr N. Madhar – who requested that Cllr D. Barnett be ‘immediately expelled’.

 There is one additional complaint from the BMEWF, claiming to act in response to some concerns from members of staff. Further, it is made explicit that the BMEWF consider their complaint to be a staff complaint rather than a private individual complaint as evidenced by the email from Richard Butcher Tuset dated 16 September 2013 17:32. The complaint from the BMEWF has caused concern for a number of reasons.

Putting these concerns in context:·        

• The BMEWF wrote a Letter of Concern to Cllr G. Theobald, Leader of the Conservative Group via email on 05 September 2013 12:15. 

• Cllr G. Theobald responded to this Letter of Concern via email on 06 September 2013 17:00 informing the BMEWF that he could not respond on the matter as Cllr Barnett was at that time subject of an official Standards Complaint. 

• Ms S. Cartwright, BMEWF Steering Group, responded by contacting Richard Butcher Tuset by email on 16 September 2013 16:30 imputing a history of publicised racist views, unsubstantiated, to Cllr D. Barnett; requesting that their Letter of Concern to Cllr G. Theobald on 05 September 2013 12:15 be accepted as an official complaint from the BMEWF.In addition it seems that they are not aware of the nature of the Standards complaint referred to by Cllr G. Theobald in his email of 06 September 2013 17:00. 

• Mr B. Foley proposes a possible course of action to conclude the complaint in an emailed letter dated 27 September 2013 to the BMEWF. 

• There is no mention on record whether the members of the public, Mr D. Hermitage, Mr T. Read and Mr N. Madhar, who initiated the Standards complaint against Cllr D. Barnett, were proffered the option to accept this proposed conclusion to their complaint.
• Ms S. Cartwright on behalf of the BMEWF Steering Group rejects this and demands that a full public hearing is the only resolution it will accept. This is despite the fact that it has been made clear that it is unlikely to result in any stronger measures being laid against Cllr D. Barnett in resolution to the complaint.

The substantive complaint against the BMEWF:

1.      The BMEWF is actively pursuing a course of corporate blackmail.
This charge is based on that the council is warned that accepting the proposed conclusion would amount to it once more ignoring racism within BHCC. Further there is an implicit threat of possible further action by the BMEWF. “BMEWF members feel very strongly that if your recommendations are followed, the Council will have yet again allowed discriminatory and racist behaviour and attitudes to go unpunished, which has been documented in the corporately-commissioned GHPO regarding BME people within Brighton & Hove City Council. The BMEWF would be very disappointed if these recommendations were followed, and may take further action. yet again allowed discriminatory and racist behaviour and attitudes to go unpunished, which has been documented in the corporately-commissioned GHPO regarding BME people within Brighton & Hove City Council.”[1]

2.      The BMEWF is evidencing a highly subjective and prejudiced ethos.
This charge is based on their presumption that a letter of recommendation, unseen, must of necessity be ignorant of either inter-racial relations or excuse ‘poor behaviour’[2] just because it was written in support of an individual that regulated body has voiced concerns about is unprofessional and undemocratic. 

3.      The BMEWF is non-transparent.
We cannot read its minutes, see the membership list or discover who has been selected to sit on its steering group. Yet it is the general public of the City of Brighton & Hove that finance the BMEWF as members are attending meetings during work time. In addition it is the general public that provides the funds for their administrative support.  

4.      The BMEWF is non-conciliatory.
This charge is based on the fact that the BMEWF is unwilling to consider meeting with Cllr D. Barnett as per her suggestion in order that she may learn from the BMEWF and its members. They instead assume that this is a “Public Relations exercise”[3]. They are however willing to meet with Cllr D. Barnett following a full hearing. 

5.      The BMEWF ignores due process for the sake of a political agenda.
This charge is based on the distribution of the email sent by the BMEWF on 21 October 2013 09:48 to Mr B. Foley but cc’d to a large number of individuals and forums not involved in the complaints process. This email is clearly an attempt to steer the Council into adopting a more rigid standard then the one recommended by Central Government. 

It is felt that the conduct exhibited by the BMEWF around this complaint against Cllr D. Barnett has been highly questionable. Forcing through a full hearing when officers who deal with these Standards complaints on a professional basis, Mr B. Foley, the Monitoring Officer and the Independent Person have already expressed the opinion that it is unlikely that a full hearing will end in a different resolution to the complaint is not conducive to either social cohesion, equality or diversity.

Further, it shows a great disregard for the added financial burden to the already stretched budget.There is also grave concern about the political maneuvering exhibited by the BMEWF. Equality and diversity is not an issue that affects just the BME members of society. 

In addition it is felt that the BMEWF has stepped outside its own stated aims by using their formal body as a means to further complaints made by individual members of the public.

Brighton & Hove City Council's Black & Minority Ethnic Workers' Forum (BMEWF) is an organisation that represents Black & Minority Ethnic (BME) Council employees. Their aim is to:

• ensure that BME staff have access to equal opportunities and receive fair treatment 

• look to involve the many diverse ethnic minority communities in the city in the council’s work.

• Support the personal development of members through training and empowerment opportunities.

• Facilitate the involvement of BME staff in consultations about council policies - in particular employment and human resource issues.

• Provide a confidential support network for members and a safe environment in which concerns can be discussed and addressed.

• Increase awareness of BME cultures and issues among council employees and our city.

• Build relationships between members, the council and communities in the city through events, communications and joint work.

• Work with the LGBT[4] Workers’ Forum, the Disabled Workers’ Forum and the unions to jointly address issues that are of common interest to all.

• Keep members up to date through regular bulletins and wider newsletters.

 (Source: http://www.brighton-hove.gov.uk/content/council-and-democracy/equality/bme-workers-forum date: 5 December 2013)
  

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[1] Response to the suggested course of action – email from Sandra Cartwright to Brian Foley dated 07 October 2013 18:46

[2] ibid

[3] ibid

[4] Gay, Lesbian, Bisexual and Transgender

Nostalgia & Racism

In Brighton a rather nasty virus has infected due process and procedure. It all started with a rather small store called Bert's. They stocked up on some rather kitschy coasters featuring the Robertson Golly and friends.

The coasters came to the notice of the general public via the pages of a local paper on 30th August 2013. A rather well respected local Councilor, Dawn Barnett, was asked for her opinion and here are her 59 words.

“I don’t think there’s anything wrong with it. In fact I’ve got a golliwog magnet sitting on my boiler. They’re nostalgic, not racist. When I was young I remember saving up for a badge showing a golliwog playing a banjo. My children had golliwogs and they preferred them to teddy bears. It’s because they’ve got happy, smiling little faces.”

The paper however is nothing but balanced and it also gets us the profound words of a veteran campaigner for Social Cohesion, Abigail Sinclair, who is the community worker for a registered charity operating as a not for profit company, Mosaic, a black and mixed parentage family group. The group works in Brighton & Hove and surrounding area; just in case you are wondering where your local chapter is.

This veteran campaigner for Social Cohesion is reported to have stated that pictures of golliwogs have “no place” in the city. She proceeds to clarify this as follows: 

 “I was called a golliwog as a kid so it’s very offensive to me. It’s not something that belongs in the present day. I hope we have moved on from that. For people like me, it resurfaces old wounds. It’s got all kinds of negative connotations.”

Now we must bear in mind that here we are talking about a coaster portraying a kitschy retro image. Further the owner of Bert’s Homestores has also assured the paper that if this coaster actually offends anyone then he would withdraw it from the shelves. In addition the image is not banned and is therefore perfectly legal. We are not dealing with pornographic images of children nor is this a depiction of a public beheading.

You would have thought that that would be that. Okay, a tad over the top if you ask me. There are plenty of objects for sale in the high streets that I find highly objectionable. Some of them I find rather offensive to my tender emotions. My solution? I don’t buy them! But it seems that this rather short article has started a whole furore.

Satisfactory conclusion.

To those who have been following my latest saga re ATOS.

Following a refusal to give in I eventually managed to get my old claim reinstated in full. It has been a struggle and has required a lot of contacting various people. I think that possibly the best lesson I have learned from all this is that you can never tell where the chink in the armour of officialdom is.

In my case it was the worry about my housing benefit, which was but one of the many consequences to my losing my benefit award, that lead to the window of opportunity to regain my original claim.

It is outrageous that severely ill and disabled individuals may be put to the additional stress of having to fight for their dignity in addition to fighting the condition that disabled them in the first instance. But sadly such is the case. I hope that my success will encourage others who are still facing this outrage. There is a light at the end of the tunnel ... even if the tunnel may at times seem endless.

Sometimes a bit of good news is only the beginning of bad news

Received a letter from the DWP informing me that they are reducing my DLA by £144.32 starting 26 November 2013.
I only get £402.80 every four weeks which consists of my higher rate mobility allowance and my medium rate personal care allowance, which is currently the only money I have coming in. So as of 26 November 2013 I will have to rely on £258.48 to not only provide the additional care I, as a severely disabled individual need but also to provide everything else ... effectively I'll be living on £64.62 a week.

I wonder what else I can do without.

The Good Housing Fairy

The Whys, the Hows, the Therefores ...

I've been asked why I've given up. There are a couple or so of answers to it all, like with most things I suppose. The short one is that I am tired, worn out, right through to the bone. There is no joy in living anymore, no spontaneity, no hope. Possibly worse is the fact that there is no sense of purpose or meaning to any of it. But the very worst without a doubt is the utter lack of control, the dis-empowerment and the constant requirement to justify your very existence.

I am disabled. It isn't a condition I particularly aspired to. I didn't elect to become a cripple. I didn't wake up one morning and decide that actually it might be quite fun not to walk anymore. It happened to me gradually and over a number of years. At first it was just the occasional cramping of the leg muscles, the pins and needles, the creeping numbness. The waking up from the middle of a deep sleep with red hot flames of agony. And you carry on taking kids to school, walking the dog and going to work.

And gradually, the occasional cramping and pins and needles and red hot flames waking you up becomes more and more frequent and eventually, you spend more time in pain and it takes you longer and longer to walk to the shops. And before you know it, you spend more time resting between steps then you spend stepping between rests and your entire life is now centered not on where you are going but how you are going to get there.

 My ex had walked out just before my youngest was born. My children were 27, 18 and 17 years of age when I was finally diagnosed. They were all either already living their own lives or well on the way to doing so. That was a relief actually. The only ones directly affected by my increased impairment and crippledom were the cats, the dog and I. The animals couldn't care less if some days I did not have the energy to dress myself.

The dog was elderly and quite happy to just wander about the back garden on the odd days I couldn't walk her. She was sedate enough to amble beside the mobility scooter on the days we did manage to get out. As long as my weak right arm did not mean that I couldn't open a tin ... and with an electric tin opener that didn't happen ... they were all happy to sleep when I did, awake when I was and adjust to a new way of life.

Which was just as well as little did I realise that the reality of living with an impairment was going to take that much of an effort. Everything had to be fought for. I was used to fighting, I'd been a single parent for most of my life. During the Thatcher years I'd fought for my right to work. During the Blair years I was actually £40.00 a week worse off working then I would have been had I elected to stay on benefits.  I'd spent years working in deprived neighbourhoods as a community development worker and a community activist. But nothing prepared me for the fight I now faced as a disabled single individual in my fifties.

Blood from a Stone

And so it started ... I am old enough to remember a time when few of us had bank accounts. You got your wages in cash, you paid for your purchases and bills in cash; no cash ... no purchases till the next wage packet came in. But banks and the use of them became more widespread and commonplace. Next,  the government decided that all benefits would be paid directly into bank accounts and so even those of us who lived on the fringes of the economic society ended up with bank accounts. Not through choice and education but through necessity.

Next came the notion of direct debits ... wonderful things really if there are no hiccups and your income keeps dribbling in at a steady pace. It may take a while to figure out how to avoid missed payments, melding up the incomings and the outgoings so that there are no gaps but eventually, you get there. Those expensive bank letters informing you that you have missed a direct debit payment because you have no money in your account stop.

(Just as an aside I always wondered what good it was to charge someone for not having money in their account. So that the next time you have some money it suddenly is reduced because they have written to you to tell you you didn't have any in there. But hey hop ... banks have to make a living I suppose even if it is at the expense of those who haven't one ...)

I've had no income since the 28th of August 2013 thanks to ATOS claiming not to have received a questionnaire I sent them. Over the past couple of days I have had no less then 6 letters from my bank ... Each one putting me further in debt to the bank by £15.00 ... so now I owe the bank a total of £90.00. I am not even thinking about the late payment surcharges I will owe the various utilities - water, gas, electric, telephone.

Cameron, you may have used your sons' payments from disability benefits to pay for his nappies but I need it to live my life. To live it, not luxuriously but just to live it. To pay my bills, to eat something other then cold toast or lukewarm soup. To keep my wheelchair functioning ...

My Surrey will trundle again

GBL Wheelchairs came today and collected my (t)rusty wheelchair. I will admit that I was far from optimistic when I saw her being rolled down the path to the gaping maws of the van that had come to take her away. I was sure I had seen the last of her.

But then later on I got a call from Liam, the nice young lad who has always looked after my trundler. The bad news ... the control box was a goner. Well, no surprise there as I had more or less realised that was the problem. But then the darling lad made my heart sing. They had tracked down a spare box and could fit it on and then my wheelchair could come home. We can go trundling again, the pair of us.

She'll be home Tuesday week! And yes, she has a name now. I have decided that her name is Surrey. In memory of the horse that carried Richard III during the Battle of Bosworth field. Richard Plantagenet too was a disabled individual fighting to live in an able bodied world.

Rolling Rolling Rolling

Everything hinges on my ability to remain mobile. I've no option but to put all my efforts in enabling its repair. I've called up a wheelchair company I've become acquainted with during my stint as a volunteer for ShopMobility. GBL Wheelchairs have looked after my (t)rusty wheelchair since I first got her. Replacing the control box is possibly the best way forward however GBL have told me that a replacement control box would come to between £300.00 to £500,00 provided they can find one that is.

There are a couple of things against it. Firstly, they no longer manufacture my wheelchair. Which makes kind of sense I suppose. My Nippy is small, for wheelchairs that is, which means that she can be used on public transport. She has very good maneuverability (I can turn her on a five pence piece). She has a goodly range which is essential in such a hilly area as Brighton and the brakes on her are instant. Another essential ... especially when you are trundling around in a pedestrian area with people always cutting across. Secondly, I haven't £300.00 never mind £500.00 ...

But, and here is the real value in having a decent wheelchair repair service, they may be able to fix my current control box; given that I got her dried out as soon as possible and therefore have hopefully limited the extent of the damage. It will still cost between £100.00 to £200.00 and I will just have to hope that it is closer to the £100.00 ... I've been saving up towards the time when the batteries needed to be renewed so can use that and just pray that my batteries will last just a little while longer.

Bad things come in threes

Sometimes I have to go out and yesterday was one of those days. I had to visit an office in Brighton and it wasn't accessible with my wheelchair. So I did the usual ... I parked my wheelchair as close to it as I could, I put it in neutral and put a plastic bag over the controls. The weather is rather unpredictable at the moment.

When I eventually got back to my (t)rusty wheelchair the seat was soaked through but I've had a wet bum before and survived it. What my chair did not survive this time was the fact that some idiot thought the carrier bag I had tied over the controls was there for the removing. My controls were soaked through and the chair wouldn't start.

I managed to get home by getting a wheelchair accessible taxi. I've put the chair in my wet-room with the heating on all night to hopefully dry the controls out. I've had to do that more then once. But that is it ... the controls are all dried out but the chair has had enough. So no more trundling for us. Well, not for the foreseeable future that is. What is really annoying is that these things always happen at the worst possible time.

I must attend court today as I am to be a witness. That is the first thing to worry about. I can get there but I am not sure how I am going to get to the court room as it is extremely inaccessible. Steep chairs just to get to the front door ... ah well, I'll manage somehow and pay the price when I get home. The case is scheduled for a day and a half so I will just have to hope that I will be called today and will not have to attend tomorrow as well.

Lets see what needs doing ...

1. find out whether the chair can be repaired.
2. find out how much it is going to be.

and take it from there. Once I have found out how much it is going to be I'll have to figure out how I am going to pay for it. My funds are rather stretched as I have had no income since the 28th of August thanks to ATOS but I have no choice really. Without my 'legs', I am utterly helpless. But maybe I can sell my cooker and I can find another few things I can do without. I haven't really anything of any value as such but hey hop ... Look at it this way girl. You've a chance to do a de-clutter ;-)

Brave New World!

I've had to cut back on help as I have to buy it all in. Of course I couldn't do it overnight as by law I am required to give notice. But at least I have not had to pay any outside help for the past 3 weeks.
It is a relief in some ways as it is one bill I will not have to worry about anymore. On the other hand, the lack of help has had a rather inevitable consequence.

I can't do everything that needs doing for myself. So I've started the 'avoid making a mess' strategy. I no longer sit in the front room. If I stick to only using my bedroom I won't have to worry about cleaning the front room. Okay ... there's the dust and things but if I don't use the room, I won't see it ... so that's okay.

I've also figured out that if I make a flask of coffee, it can last me all day and I can drink straight from the flask so that saves on the time I have to spend in the kitchen; as well as on the dirty dishes ;-) So now the new regime is:

I pick a time when I get up. I wake up a few times during the night due to pain but I don't get up till I see daylight. If the pain level is high, I just sit on my bed till I can stand. I go to the kitchen, feed the cat and make some toast while the kettle is boiling.

I generally have to give up here and go back to bed for a while.

I go back to the kitchen and hopefully the kettle, which has cooled down by now, is not so cool that it will take too long to boil. I grab my cold toast, poor some boiled water in the flask and rinse it out at the same time as I rinse out the saucepan from last night. Measure few spoons of instant coffee into the flask.

I have to go back to bed for a while because of the pain levels.

Generally by about 11am I will have managed to make a flask of coffee and brought it back to my bedroom to have my first hot drink of the day. I don't mind telling you that by now I am gasping for a hot drink. But at least I know I will have a hot(ish) drink till I give up on the day later on.

The rest of the day is spent keeping on eye on Freecycle (I am a moderator on our local site), sorting out bits and pieces, knitting and just waiting for the day to end. Generally around 5:30-6pm I head for the kitchen again. Luckily I have an electric tin-opener so I open a tin of soup. I have unearthed my hotplate and it has a timer, so the saucepan goes on there with the contents of the soup tin.

Pain levels send me back to bed.

So far I've managed to avoid having a bowl of hot soup. But at least I know it has warmed through thoroughly at least once before I get around to eating it. I've also discovered that eating it straight from the saucepan keeps the dirty crockery down.

An Open Letter to David Cameron

Dear Mr Cameron,

On 16^th August 2006 I was judged to be sufficiently disabled to warrant being awarded the higher rate mobility allowance and the lower rate personal care; indefinitely as my condition is not curable. I have severe Peripheral Vascular Disease. I was also in receipt of Incapacity Benefit at that time.

Within a few months it was decided, unbeknownst to me, that in fact I should have the medium rate of personal care. However whoever was to have updated the records, forgot to tick some box somewhere and as a result the decision, though made, wasn’t acted on. This error came to light approximately a year or so later. The relevant department was more than willing to acknowledge that the award was back-dated. It was also willing to accept that it was at fault for not correctly updating the records at the time the original decision was made. It however claimed that as the error was over a year old, it would not pay the back-pay that would have been my due.

I have had to face ATOS and its assessment. I could not attend the local assessment centre as it is not wheelchair friendly. I was threatened with the loss of my sole source of income. I informed them that I did not refuse to undergo an assessment but that I could not attend the centre. I was left to wonder whether they would just stop my benefits until, just a week before the day I was due to attend the centre, they finally agreed to visit me at home. Mind you, I had to provide a letter from my doctor confirming that I could not attend the centre and I had 24 hours to provide the letter. After another lengthy conversation it was eventually agreed that I could fax the letter and I was provided with a fax number.

My surgery faxed the letter over. Thankfully, I checked to make sure they had received the fax containing the letter as despite my surgery having faxed it, they claimed not to have received it. So I asked my GPs’ office manager whether she would fax it again while I was on the phone to ATOS. This time, they received it. A few weeks later a Doctor came to the house and I had my medical assessment following which I was confirmed as being eligible to ESA.

A mobility scooter I bought with funds I had saved up for was wrecked by a man who was angry. The criminal damage ended up in court. The man was found guilty and I was awarded compensation for what effectively served as my legs. The paltry sum of £80.00! Of which I eventually received but £75.00 as for some reason administration meant I had to forego £5.00 of the compensation. I suggest you try and get a mobility scooter that can cope with the hills of Brighton for £80.00. I ended up having to save again for a considerable amount of time to replace the mobility scooter.

Then a young man decided to steal my car, just a couple of hours after it came back from its 2nd MOT. I never saw the car again. The young man was found guilty and ordered to compensate me for the loss of my car. The paltry sum of £200.00! A sum I have yet to receive though the order was made in March of this year; which was, just as a matter of interest 42 weeks after my car was stolen. Another interesting fact is that the compensation I was awarded was £38.00 less than what I had paid to get the car through its MOT.

Had either man broken my legs making it impossible for me to move around outside independently, the matter would have been dealt with differently. But your courts of law regarded my mobility scooter and my car as some bits of machinery. Victim Impact Statement?; utterly disregarded as was the fact that both crimes effectively left me housebound, increased my dependency on others and consequently doubled my weekly outgoings as a result. One of your Conservative MPs agreed to look into it. After months of unsatisfactory exchanges, where Simon Kirby was silent except for when directly asked, I finally managed to get hold of the copies of his efforts on my behalf; a series of extremely garbled emails addressing nothing.

Then yet another letter from ATOS, informing me that unless I return the questionnaire by the 7^th of July my benefits as a severely disabled individual will cease; except that surprisingly, there was no questionnaire. Yet more phone calls, chasing this questionnaire which eventually arrived. I answer the questionnaire. I post the questionnaire. On the 28^th of August, I prepare to pay some outstanding bills only to discover that my ESA has ceased. It is the bank holiday weekend and so I have to wait till the following Tuesday only to hear that my sole source of income has ceased as ATOS claim not to have received the questionnaire.

No ifs, no ands, no buts. Just cut off everything. No warning, no appeal, nothing. I, as a severely disabled individual have to start the entire process of registering a new claim. I have to go through a period of a minimum of three months awaiting an assessment with ATOS. I have to apply for sick notes. I have to apply for housing benefit or risk losing my one bedroom residence.

Mr Cameron, I refuse! I will carry on with my life and do the things I can for as long as I can. I will use my phone, till it gets cut off. I will buy my food, till I can’t pay for it anymore. I will stay in this house, till they evict me. And once they evict me, I will leave. I’ll trundle in my wheelchair till it stops and there I will sit till it is all over. I’ve fought all my life. To look after my brothers while mum was at work; to stick by my children when their father walked out. I studied, worked and volunteered, I fought. I give up!

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Things that please!

How sad am I ... No, wait. I am serious about this. I am a real sad case and no mistake. On Saturday morning I opened my front door and there ... right in front of my disbelieving eyes ... finally and at long last after 10 months of waiting ... my very own runway to FREEDOM!!! The long awaited ramped access was there waiting for me to take that first step into the great big wide world without first having to heave a 73kg wheelchair over a 19cm threshold.

I was still in my PJs but didn't let that stop me ... there, at 10:45am on the 20th of October 2012, I trundled my wheelchair from the kitchen, through the front room, squeezed round the corner into the hallway and then ... wait for it, wait for it ... I trundled right out of the front door, down my path and to the pavement! It was GLORIOUS! And then, just because I could ... that and the fact that I was still in my PJs and slippers ;) ... I turned right around and trundled right up the path again, through the waiting front door, down the hall, into the front room and ended up with the chair coming to its final halt just in front of its parking and charging station in the kitchen ...

Later that day, I went out to meet my eldest for lunch and a trundling bimble round the charity shops in George Street, Hove. And when I came home, I just sailed in, with my shopping. I didn't realise how much of a difference it made in the pain levels. The level of pain was manageable and though I was tired, it was a good sort of tired and not the sheer exhaustion and excruciating, shoot me now please type of pain, I used to get every time I had to exit the house before.

Medical vs. Social

One piece of legislation all impaired individuals should get themselves thoroughly acquainted with is the Equalities Act 2010 (EA2010). Aha, you may say, what was different before.

Well, simply this … the Medical Model of Disability (MMD) defines disability by the individuals’ level of physical, sensory or mental functioning and performance … and doesn’t that make us sound like trained monkeys ... against medically determined norms in development. Fail to meet up to these levels and fail long enough and you are disabled. We are long term failures of the various medical intervention procurers, dispensers and providers to fix our shortfalls against their medically determined developmental norms. To be fair, the medical profession does not blame us for failing. However this way of seeing disability does impose a diminished view of us. It focuses entirely on what we cannot do. 

Though the MMD is still the arbiter of who will be considered impaired for the purposes of the EA2010, the act itself actually imposes a very positive view on disability. It does this by addressing disability through the Social Model of Disability (SMD). The SMD starts from the premise that those people who have been defined as disabled according to the MMD have an impairment …
You could look at it like this, the MMD declares us as being deficient whereas the SMD views us as having something extra. According to the SMD disability is imposed on individuals with an impairment by environmental or organisational deficits. See, positive from the start …

The delights of trundling

We take walking about on crowded pavements and in and out of shops as a matter of course. When you think about it, it is quite an achievement that we do not experience more accidental collisions. Think about it for a moment … Churchill Square or London Road the week before kids are due to go back to school; or how about the Lanes on a sunny Saturday lunchtime. Walking on crowded pavements has become so much part of us, it is like second nature and most of us do it without having to think about it at all.

Unlike walking, doing those things in a power chair or wheelchair can be very stressful and it certainly is very tiring. You cannot quickly sidestep when the pedestrian in front of you suddenly stops in his/her tracks to look at a shop window. A wheel chair or power chair is a heavy piece of equipment and can cause immense damage so you have to be constantly aware of small children making a dash in the opposite direction from mum or dad or small dogs dragging their heels at the end of a long leash. Groups of chance met long time no see friends standing in the middle of a pavement is something you just walk around when you are on foot. In a wheelchair or power-chair it requires a tad more active planning.

I am mobility impaired and rely on a power chair to take part in normal everyday activities such as visiting friends, going shopping or taking the grandchildren to the park. I do not feel that being disabled necessarily makes me worthy of more or less consideration than any other individual going about their daily business. Essentially I view my impairment as part of who I am; just like the colour of my eyes and hair, my height, weight and the fact that my voice couldn’t carry a tune out of a burning building even if you put it in a bucket.

I am not too proud to ask for help, if and when I need it and though it does grate when total strangers suddenly offer their help, I accept that it is done from a caring impulse and thank them kindly. I have noticed that since I have been reliant on the chair for getting about that I tend to get called luv, darling and sweetheart rather more often than before; much in the way we tend to talk to children or doddering old fools really. I suppose I notice it more as I haven’t always been mobility impaired. But again, I realise that it is done with the best of intentions and I accept it is as such.

All these things and others I haven’t mentioned are part and parcel of taking an active part in community life. I accept that they will cost me somewhat more effort than the average participant because of my personal circumstances. I don’t mind, in fact I am delighted when small children stare at me in my chair. I am more than happy to smile at them, wave and even stop and talk to them about the chair and why I am in it. I don’t mind the funny one-liners, “give’s a lift luv”, “it’s alright for some” “room for a littl’n?”. Over time I have garnered a list of one-liners I can give in response.

I was rather taken aback when some lout decided to just cut in and walked right in front of my forward proceeding wheelchair. Not so much at the fact that I had to brake rather quickly ... you get used to that in a wheelchair ... but more at the level of abuse he decided to hurl at me, despite the fact that both the wheelchair and I had come to a stop at least three feet from him. Oh, and in case you are reading this … No, I don’t know who my father is but I wasn’t born a puppy so a bastard I may be but a bitch I am not: and for your information, there are certain adult activities I most certainly would not engage in on a public thoroughfare.

Quick intro to the trundler

I am a mother and a grandmother. I embarrass my children by talking to perfectly strange babies on the bus and making them laugh – the babies laugh that is, not my children … and the babies aren’t strange so much but just babies I haven’t been formally introduced to.

Oh and I am a cripple. I don’t walk places; I trundle there in my wheelchair. I have severe Peripheral Vascular Disease in both legs as well as in my right arm. There are some other bits and pieces that do not work as well as they should do but that I reckon is just the wages of life lived in the lane of long term single parenthood on the fringes of a society that values style over substance.

 

 

 I'm not sure where this blog is going to take me but I do know that there are some things I feel I need to say. So when I do, this is where they will be.