#SaveWILG

Open Letter to Whom it May Concern

The following letter is written from the heart and broaches the difficult arena of disability and sexuality, which is a topic I will be focusing on over the coming months. I am excited to announce that I will be working with Dave Brown who is the Principal at The Centre for ICASA, the UK Sexual Healing Centre.

My issues will become clear to those who read this difficult-to-compose open letter, which is written with honesty and openness. Please be aware that this letter does touch upon adult themes though, as always, respect is at the centre of everything that I write.

Please note that the piece of art used below is Girl with Tear by Roy Lichtenstein. I do not hold copyright for this image and this image is not connected with my work in any way.

***

As well as living with Friedreich’s Ataxia, I am also locked in a struggle with two familiar bedfellows of this progressive genetic condition – loneliness and depression. These negative emotions are exasperated by the fact that I cannot fully function in the sexual game of life, despite being in possession of all the necessary equipment and having a healthy sex drive.

There are many reasons why I feel excluded from society. I discussed many of the limitations I feel in my latest book of poetry, Dancing on Thin Ice. I have included many of the poems below between paragraphs trying to explain, with respect at all times, the emotions and frustrations that I face.

I have not been fortunate enough to enjoy much success on the dating scene. The relationships I have had with the opposite sex have poisoned my mind and left me feeling that the ideal union is not attainable.

Fairytale Romance

She’s out there, somewhere

My angelic devotee.

A buxom beauty 

With cascading locks of hair

Residing with pigs that fly

I guess part of the problem is that my idea of the ideal union is far from conventional. I have experienced a conventional relationship in the past, got married, experienced the humdrum reality that people bizarrely seem to strive for. I thankfully found an escape route when my ex proved that her legs were more spreadable than Clover margarine. Suddenly, I was booted out of my stagnant position of a husband and free to build a life of my choosing.

Freedom is not much fun when you live with Friedreich’s Ataxia. There are so many different hurdles put in the way of true equality for those with only the slightest difference from the midstream masses. Ataxians face an arduous assault course full of hazardous pitfalls when aiming towards a level playing field, particularly when it comes to the dating scene.

For Your Entertainment

I am undateable

According to Channel Four

Look at the cute crips

Patronise at your leisure

While society stands still

In the ten years I have been divorced, I am proud of what I have achieved. I am the author of two books, I have been awarded an Honorary Fellowship for my work in Disability Rights by Glyndwr University and have led the successful #SaveWILG campaign to help protect independent living for those with high support needs in Wales. This is in addition to maintaining and designing my quirky bachelor pad and travelling across England and Wales. However, I remain unlucky and frustrated in my relations with the opposite sex.

Don’t get me wrong, I have plenty of female friends who are very important to me, but I am missing out on that special someone who I can become intimate with. To make this situation even more depressing I have been robbed of all dexterity due to the effects of FA. I shouldn’t have to paint a picture of the limits this means that I face. The options open to most men with regard to sexual release just aren’t there for me.

The most worrying aspect of this is to my general health. The following paragraph was taken from Reuters Health:

” Ejaculation frequency could be a sign of overall health. … (Reuters Health) – – Men who ejaculate often may have a lower risk of prostate cancer than their peers who don’t do it as frequently, a U.S. study suggests.”

So what is the solution? Every time I pluck up the courage to discuss the issue with the doctor I am fobbed off through sheer embarrassment. It is an area that people don’t feel comfortable discussing, but if it saves lives then it must be worth opening up about.

As I can’t do anything with my own, useless pair of hands then the obvious answer is to find someone with hands that would help. This is not an easy thing to do. I have been trying for ten years. I have had one or two successful arrangements that were fun while they lasted, but had no long term stability. Frustratingly, they also cost me a pretty penny. Oh to be desirable without financial incentive…

The problem is trying to achieve a perfect settlement whilst also making sure all parties maintain their dignity and self-respect. I have no desire to merely use a member of the opposite sex for my own sexual gratification. I much prefer to build a true friendship that has an intimate element to it. This sounds acceptable on paper, but in the real world it is extremely difficult to find. It is not as if you can approach someone in the supermarket and ask if they would be interested in a friendship whilst enquiring about the strength of their wrists.

Superficial Puzzle

Unrequited lust

Equals a half-empty bed

Desexualised

Hunting down the missing piece

Undesirable, alone

I can spend so much money on simply meeting a sexual need. Ejaculation is good for our physical and mental well-being, so I find it strange that it is not discussed more openly and seriously. Why do I feel so sleazy writing about something that will help my health? The simple fact is that I do not believe that I should have to fund something that I need to stay healthy.  If I lived in the Netherlands I believe I wouldn’t have to consider using my own money to fulfill a biological function.

The following link takes you to a page that explains all about sex care and how it works in the Netherlands. This should be read by everyone, without embarrassment. It is something that I would like to see established in the United Kingdom, but I know how difficult it will be for our antiquated, Victorian nation to follow the lead of a progressive, liberal country.

In the meantime, I will have to find the money from somewhere to keep myself in order. The only other cheap alternative I have at my disposal is phone sex. Over the years I have spent a small fortune on Premium Rate phone lines. This has only ground to a halt now that I receive 24/7 support and therefore do not feel comfortable indulging in sex chat while there is someone else in the room. I would not dream of putting any of my support workers in such an uncomfortable situation. However, this does not help me and my needs.

Hanging On The Telephone

Compulsive habit

Born out of pure loneliness

Premium phone calls

Cost money and dignity

Victim of the modern world?

I suppose I should be grateful that I am no longer running up huge phone bills after paying 51p per minute or something extortionate like that. It became an unhealthy compulsion that I didn’t even enjoy. After the show was over I would be left bemoaning the situation I found myself in and I would always end up apologising to the woman on the other end of the phone. They would always be puzzled about why I felt the need to apologise. I guess I am just a decent human being and I don’t like the idea of using anybody for my own sexual gratification. Unfortunately, needs must and no one was ever hurt or offended…

I am always aware that time is at a premium as I search for an unconventional partner in crime. The median age of death for people living with Friedreich’s Ataxia is 35. I am rapidly approaching my 43rd birthday. The closest I have come to finding the perfect match at the moment is through my relationship with my friend Robyn who I wrote the following Tanka about:

Wonder Woman

The  ideal union

A new woman in my life 

Plastic fantastic

Her perfectly formed figure

Mannequin in lingerie

Of course, I have a number of close female friends who I value and respect greatly. I am a good guy, therefore I also have the same amount of respect for their husbands and partners. Friendship comes easy to me, it is steering relationships down a more intimate avenue that I have difficulties with.

I think I have covered most of the bases in this article. There are so many stories that I could share about being “ghosted”  or the multiple times I have put myself in danger for the allure of trying to create an intimate situation through sex workers. I often get confused between love and sex, as it took me way too long to realise that neither of these mean anything without the other.

Square Peg, Round Hole

Attempting an impossible fit

Without wishing to look an utter tit

Will that spaz ever manage it?

Square peg, round hole

 

Acceptance is what we strive for

A level playing field, no more

Let me display my regular, everyday, humdrum core

Square peg, round hole

 

Accessibility would be a start

Open the barriers to superficial hearts

And be rewarded with love that won’t tear you apart

Square peg, round hole

 

Conformity with the masses is a must

Difference as sexy as a stale pie crust

Something, something that leads to lust

Square peg, round hole

 

Fed up already of this rhyming lark

Guess I ain’t no John Cooper Clarke

How the hell will I make my mark?

Square peg, round hole

 

Instead of copying another man’s style

I need to go the extra mile

Writing personally with added guile

Square peg, round hole

 

Breaking free from restrictions

While penning accurate descriptions

In free-form style – it’s what I need to do

Square peg, round hole

 

So I guess I’ll never fit

Into your confines, YOU utter tit

I’ll be myself – get used to it

Square peg, round fucking hole

This article is not an advert, but if you are in a position to offer solutions to the situation I find myself in then please feel free to contact me in private via nathanleedavies @ gmail.com

BBC News: Disability Work Opportunities Under Threat

The BBC have written a shocking story about the potential closure of work opportunities for disabled people in the Wrexham area, due to further council cuts.

This is depressing news, but hardly surprising under a Conservative/Independent led council with a history of putting profit before people.

This cannot be allowed to happen, and I would offer support to anyone interested in campaigning to stop this measure.

I have included yesterday’s BBC report below.

***

Two projects which provide work opportunities for about 75 people with a disability look set to be closed in the latest round of council cuts.

Wrexham Council plans could hit the Cunliffe enablement centre in Rhosddu and the Erlas garden project.

It closed other schemes last year as part of an ongoing disability services review aimed at saving £334,000.

Council bosses said they would find other ways to support those affected.

The review has already led to the closure of Le Cafe and Portable Appliance Testing in Rhosddu, along with the Coverall laundry in Rhosymedre.

Councillor Joan Lowe, cabinet member for health and adult social care, said the Cunliffe and Erlas projects “deliver good services that are well regarded by service users, their families and carers”.

“There are, however, a number of issues and challenges with the sites and facilities that mean they do not offer the best opportunities for community participation and can limit community inclusion.

“The proposal is for the council to reshape day and work opportunities services to deliver more flexible, person-centred services that are fit for purpose, offer quality, are sustainable and make more effective use of available resources.”

The changes to the service form part of cuts agreed by executive board members for 2019/20, which were met with anger by opposition councillors last year.

There are currently 39 people supported at the Cunliffe Enablement Centre and 36 at the Erlas Garden project.

The latest plans will be discussed by councillors at a scrutiny committee meeting on Wednesday, according to the Local Democracy Reporting Service.

 

_109609307_cunliffecentre_wxm_google

Strathclyde University LVST Trial

Last year I put my name down to be involved in a participation study organised by Strathclyde University. It was looking specifically at the effectiveness of Lee Silverman Voice Technique (LSVT) in improving communication in people with Friedreich’s Ataxia.

Unfortunately, I was overwhelmed with work for the #SaveWILG campaign and had to pull out of my proposed involvement. I was delighted to receive an update on this research from Professor Anja Lowit who provided me with a summary of her findings. It makes for interesting reading, especially at a time when I am hyper aware of the progressive limitations of life with Friedreich’s Ataxia.

***

A little background information to begin with: 

LSVT was originally developed for people with Parkinson’s Disease, but there is some suggestion that it might also be beneficial for those with ataxia as well. We are trying to establish whether this is true by investigating whether the communication of people with Friedreich’s Ataxia improves from this treatment. In addition, we also want to look at their experiences of the treatment, e.g. whether it was too intensive or tiring.

Who is carrying out the research?

The research is being carried out by Mariam Mahmood, who is a qualified speech and language therapist and LSVT Practitioner. Mariam is also registered as an MPhil student at the University of Strathclyde. In addition, Prof Anja Lowit, who is Mariam’s supervisor, will be involved in some aspects of the research. Dr Anja Kuschmann, the second supervisor, will also have access to the research data and provide advice on the project.

***

End of study report – lay summary

We performed a feasibility study of speech therapy for people with hereditary ataxia. The aim of the project was to evaluate whether therapy would result in improved communication, whether it had any negative side effects, and how people felt about treatment being delivered remotely with Skype.

The therapy consisted of 16 sessions (45-60 min duration), which were provided over Skype twice a week. Participants were asked to practice another 4 or 5 times a week in addition to these. The sessions focused on establishing a strong voice, first on long /a/ sounds, then in speech (short phrases building up to longer passages). We recorded participants twice before treatment, and twice afterwards, i.e. immediately at the end of therapy, and about 2 months later.

The outcomes of our study were very positive. We managed to recruit sufficient people in the timeframe we set ourselves, and nobody dropped out because of problems caused by the treatment. Therapy also did not negatively affect participants’ fatigue levels. All participants felt that treatment via Skype worked well, it reduced fatigue from travelling to clinic, and allowed those still in employment to participate more easily.

Our measures indicate that after therapy, participants’ voices sounded better and less strained, and they had more breath available to speak. Their intelligibility did not change much across the assessment sessions when unfamiliar judges listened to the recordings, but 13 of the 19 participants thought they sounded clearer or had to repeat themselves less often after treatment. In 7 cases, this was also commented on by friends or family. In addition, half of the participants reported that they had increased confidence or reduced anxiety when communicating. This had significant impact for some who were initially worried about continuing in their employment, or who had become socially isolated due to their communication problems, and who had those worries removed after treatment.

Our project is the largest study ever to be conducted on speech therapy for people with hereditary ataxia. It has demonstrated the value of treatment for this patient group, in particular the potential to improve their communication as well as quality of life. However, further research will be necessary to fine-tune the treatment approach to achieve better results for intelligibility.

Pulling Myself Together

I have been a little out of sorts over the past week or so, thanks to a chest infection. Thankfully, I have come out the other side and am feeling stronger with every passing day.

It is always scary to be inflicted with a chest infection, as I am only too aware that such infections usually finish off my brothers and sisters who live with Ataxia. I didn’t want to join those unlucky few at this time. There is an election to win before I go anywhere…

The article I have put together below, just sums up some of my moods and feelings over the past few days, while the madness continues with my valued members of staff also being stricken down by illness.

***

FACEBOOK STATUS 1:

I will probably have to stay offline for the next few days as I have just seen the doctor who said I have a chest infection. Bloody hell, this is all I need. I have to take this seriously as living with Ataxia is enough on it’s own without the added complications of a chest infection. I am now on antibiotics so hopefully they will do the trick as I do not fancy a stint in the Maelor. Thankfully, I have some excellent PA’s who will help me get over this and I will be back to full strength in no time.

***

FACEBOOK STATUS 2:

I have just had another home visit by a GP who has put me on a stronger set of antibiotics. Hopefully, these will calm me down and stop me from having regular panic attacks. If I can get a good night sleep, I am sure that will help me loads.

I have also had a letter from ICS detailing the protest for them to make a decision. Basically, I think they were just playing for time. I am too exhausted to think of the ramifications of this. That is a battle for another day…

***

FACEBOOK STATUS 3:

A third out of hours doctor visited me last night and provided me with the super strength antibiotics that I need to shift this infection off my chest. It seems to be doing the trick and I am regaining my appetite while breathing has become easier.

I am disappointed that I still do not have the strength needed to attend the Nick Whitehead Theatre this evening to vote for Helen Grout as Wrexham’s Labour Party candidate for the forthcoming General Election. I am totally pleased to openly back Helen as the only candidate capable of making a real difference to the community of Wrexham as a whole.

I am also pleased that my good friend, Julie Rogers-Owen, will be attending the Hustings and voting in the only sensible way. If the people of Wrexham, really want to see positive politics in action then it is crucial that Labour Party members vote for Helen Grout tonight.

***

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

***

I have two piles of books in my living room. They need shifting if only to quieten the taunting voices in my head. You know it makes sense…

thumbnail_image

Please read the following article: Dancing on Thin Ice: Available Now

***

There is still much work to be done on the #SaveWILG campaign. It seems as if recipients from several Local Authority areas are still waiting on the results of their assessments. I want to emphasise that this is not because of any failing from ICS Services – the independent assessment company who have been put in charge of carrying out the reassessments – but because we are still waiting on the Local Authorities that let us down in the first place. This appears to be a totally ludicrous situation, as it was because we had no confidence in the Councils in the first place, that we launched the campaign. They are still making us wait by holding up discussions with ICS Services. I want to make sure that this situation is sorted out way before the upcoming festive period, as all WILG recipients deserve this after the torrid time they have been put through.

WALESPOSTCARDFRONT001


***

Please watch the following video before deciding what to do at the Ballot Box on December 12th:

 

In Support of Helen Grout

I was shocked and saddened when Ian Lucas MP announced that he was stepping down as MP for Wrexham. Ian and I have disagreed about much in the past, but whenever I have needed his support I have been able to call on him. He has spoke out on my behalf on several occasions and attended key meetings with me in relation to the #SaveWILG campaign. His knowledge and experience will be missed in the Wrexham area.

However, it has just been announced that Helen Grout will be standing to become the next Labour candidate for Wrexham MP. She will certainly be getting my support and I call on ALL members of Wrexham CLP to join me in voting for her.

Helen will be a outstanding MP, due to her honesty, integrity, and socialist principles. It is absolutely vital that Wrexham CLP elect a candidate that shares the vision set out by Jeremy Corbyn and shared in Cardiff by Mark Drakeford.

On November 8th, let us join together and help to cement a united Labour Party.

You can find Helen’s official Facebook page by clicking on this link. 

Don’t forget to use the hashtag #Helen4WxmMP when discussing this campaign on Twitter.

I implore ALL WREXHAM LABOUR PARTY MEMBERS to ensure you are at THE CATRIN FINCH CENTRE, WREXHAM, FRIDAY 8TH NOVEMBER AT 7PM to support Helen. This is such an exciting opportunity for Wrexham, the Labour Party and the wider community.

Social Care problems – Taking On the Local Authority

The following article was taken from the DPAC website. I thought it might be of use to individuals having the same problems with social care services that I have experienced throughout the #SaveWILG campaign.

It seems that this information might be more relevant to my comrades in England, but it is a good starting ground for all disabled activists across the United Kingdom.

It should also be noted that DPAC reblogged this article mainly from the Independent Living website https://www.independentliving.co.uk/

***

What to do when you have a problem with social care services?

Many people have a problem with services they receive from their local authority, either for themselves or someone they are caring for. As council budgets are increasingly under pressure, and demand for services is going up, it is no surprise that there may be a gap between what is offered and what is expected when it comes to social care services.

Monitoring Officers are responsible for investigating unlawfulness

If you have an issue with a local authority, there is an easy – and free! – way of raising your concerns. It is not much talked about, so you may well not realise that every council has a “Monitoring Officer“, whose brief is to look out for incidents of alleged unlawfulness within the council.

The duties of a Monitoring Officer were established under the Local Government and Housing Act 1989. If they become aware of any proposal, decision or omission by the local authority that has led, or is likely to lead, to a contravention of any statute – like the Care Act – or Regulations – like the Assessment Regulations – or rule of law, they have to prepare a report and arrange for each member of the authority to receive a copy. While members are considering the report, the relevant actions or proposals are automatically suspended. They have 21 days to consider the report.

MOs have to look into any matters referred to them

To keep Monitoring Officers independent, they are protected from dismissal, except through special steps. The creation of the office is intended to manage legal risk in an effective way, thus minimising the need for legal proceedings. The MO or their deputy is personally responsible for considering any matter referred to them which involves a coherent statement that the local authority is in breach of the law in something it has done or failed to do. They can’t just ignore it. If they believe that the case you have brought to their attention is not a matter of unlawfulness, they should provide you with the reasons why they have reached this conclusion. The council has to provide the Monitoring Officer with the resources necessary to do their job, including paying for legal opinion, if it is outside the expertise of the MO.

As you know, there is a Local Authority Ombudsman scheme for problems with council services, but the ombudsman will not consider your case until you have made a complaint to the council and received no satisfaction. Making a representation to the Monitoring Officer is an effective way of showing that you have tried to resolve the issue with the LA.

Information from Belinda Schwehr of Care and Health Law

This information about the role of Monitoring Officers comes from Belinda Schwehr, the leading expert in adult social care law. She has also put together a list of contact details for most MOs in the country. It is downloadable as a PDF from the page link below, about halfway down.

http://www.schwehroncare.co.uk/using-the-monitoring-officer-as-a-free-and-convenient-means-to-raise-concerns-about-illegality-in-the-public-law-sense-in-adult-social-care/

Although approaching a Monitoring Officer is free, it does require you to understand the law sufficiently to be able to make a case as to why you believe the authority is acting in contravention of it.

If you are in a dispute with your local authority about adult social care, the legal advice charity Cascaidr, is a good place to start to look for advice. https://www.cascaidr.org.uk/contact-us/

Mainly reblogged from Independent Living https://www.independentliving.co.uk/

 

#SaveWILG Campaign Update

I have received an update from the Welsh Government, on their efforts to provide independent assessments to all WILG recipients who requested one. It read as follows:

All 14 local authorities who have former WILG recipients who have requested an independent assessment now have a data sharing agreement in place with ICS. As a result ICS now has basic data on the majority of the 50 recipients who have requested an independent assessment in order to progress these. This does not include details of previous care assessments or care plans as both ICS and us wanted their social workers to go into this process without any preconceptions of people’s care needs.

Consequently ICS is now arranging appointments for their social workers to undertake these and has already undertaken first appointments with a number of the 50 recipients across Wales. Following these ICS’ social workers will write up respective care assessments for submission to ICS’ quality control, before discussion with the relevant local authority representative and subsequently a joint discussion with the former WILG recipient concerned. On the basis of the current position ICS estimates it will have completed all assessments by the end of November. 

The reassessment that I received went very well, and was not hard work at all. I had feared that it would be much more invasive than it was. The social worker from ICS was both professional and friendly. She listened attentively to the case we made for 24/7 support, and said that she would be in touch with a decision in between three and five weeks. That was on October 1st.

It is good news to hear that ICS plan to have all the assessments complete by the end of November. This is something that I believe is very important, as the WILG recipients affected do not want another Xmas of worry and stress.

I have spent the last two Christmas periods busy on Twitter, while the rest of my family have enjoyed Xmas dinner. I could not detach myself from the fight to #SaveWILG, even during the festivities. My very way of life was on the line, and I was in no mood to join in with the celebrations while WILG recipients were struggling in such a way. Fingers crossed that this year I will be able to enjoy some Turkey, rather than the meagre meal of beans on toast that I have stubbornly eaten for the past two years in order to make a point.

If any WILG recipients, or their families/friends, still have concerns over the assessment process then please do get in touch.

WALESPOSTCARDFRONT001