Off to Sweden on Saturday, hopefully bi-skiing and if not then just ski-karting. very excited…

http://www.technologyreview.com/news/534206/a-brain-computer-interface-that-works-wirelessly/

Reads like a scary science-fiction novel, we are getting closer but don’t think I’m up for volunteering yet. Still sounds a bit invasive for my liking.

super excited about another jampacked year including the following treats:

caribou / 14 mar, above and beyond / 4th apr, John Hopkins / 24th apr – Brixton O2\ Academy

going to Sweden in February to do some bisking

(potentially Ibiza), Italy and Switzerland in June and July

So at the moment it’s working hard with challenging new cloud-based work project, managing the challenges of care continuity & some interesting side projects regarding disability, accessibility and brain-computer interfaces.

Very much enjoyed watching three incarnations of “the curious incident of the dog in the night-time” by national theatre productions, which Ellen has been very much involved in alongside lead designer Bunny Christie. The Cottesloe (dark and intimate), Gilgud (glitzy and spectacular) & Lowry (emotional and immersive) have each housed enchanting but very different productions with completely separate casts.

Best wishes to all in 2015

http://uk.virginmoneygiving.com/fundraiser-web/fundraiser/showFundraiserProfilePage.action?userUrl=JennyLee

Good on Jenny, running a huge long way for the benefit of newly injured tetraplegics trying to adjust to a difficult but potentially still very rewarding life. Jenny is a very special lady having helped us through a lot of hard times and was maid of honour at our wedding.

Please give generously for a great cause if you can.

A short post to reflect over the Christmas period.

It’s been quite emotional to see all of the family and friends that I don’t get to see for most of the year and to reflect with them about the past. Celebrating a little too much with friends has been lots of fun but the serious part has been being reminded that the challenges have not been unsurmountable and that we can look to the future with confidence regarding the challenges ahead. My mum and dad will both be retiring within the next few years and this will bring new situations and possibilities which I look forward to.

Self reflection has brought me some sad moments over the past few weeks as it sometimes does when I stop and do a reality check. Reality of disability is a “hard pill to swallow” when I consider my limitations and lament over the activities I can’t do and objectives that I can’t reach. Then it’s time to get back to realising those that are achievable and being glad of what I have.

I’m glad that Christmas and New Year have enabled me to appreciate my brothers,sisters and father and mother (and in-laws), my raison d’être and some very special friends. I feel blessed.

there will be an article about Ellen and myself in the Oxford mail tomorrow if anyone is interested

http://www.oxfordmail.co.uk/archive/2014/12/11/11658346.Standlake_couple_s_inspiring_love_story_wins_national_award/

Really sad to hear about the passing of Stella Young, enjoyed watching her voice her opinions on disability and perception.

“Disability doesn’t make you exceptional, but questioning what you think you know about it does.”  – Stella Young

The idea that we should be actively trying to encourage the public to raise their expectations of what disabled people should be able to achieve will help us lower the barriers of social isolation that confront the disabled population every day. Given sufficient resources the vast majority of disabled people can be as productive members of society as the rest of the non-disabled population.

RIP Stella

what a spectacular couple of days, visited number 10 Downing Street yesterday to meet Samantha Cameron and have a tour. We were extremely privileged by being given the permission of Mr Cameron himself to visit the Prime Minister’s office as well as the Cabinet room, chancellors meeting rooms and the rest of the ground floor of Downing Street. Mrs Cameron was delightfully engaging and displayed a wealth of knowledge and interest in a number of really important issues in discussion with the “real-life” winners of the cosmopolitan awards. She was very flattering and actually called me “very handsome” when talking to Ellen and I. Of all the incredible peeople I have met I think the most inspirational person has to be the wonderful Kirsty Howard, if you don’t know who she is then you should… Google is your friend.

http://www.cosmopolitan.co.uk/entertainment/news/a31666/ultimate-women-awards-real-life-winners-love-story-tom-ellen/

We have had an amazing couple of days being pampered with gifts and an award, for the love story category in the Hearst Company’s Cosmopolitan Magazine Ultimate Woman Awards 2014.

Yesterday was the award ceremony where we were made aware of many real issues being faced by people in the world including forced marriage, detecting and fighting cancer, youth violence and living with undiagnosed life-threatening disease. It was nice to meet celebrities taking it seriously and the inspirational people involved in the campaigns.

We were presented with the award and it was lovely to see our love and appreciation for life reflected by the audience.

Thanks to all the events team including Rosie, Jean, magazine editor Louise. Really enjoyed meeting Fearne Cotton, Pixie Lott, Tulisa, Danni from “The Script”, Millie Mackintosh and the wonderful inspirational Kirsty

Enjoyed seeing the feisty Mel B and McBusted in the flesh and love that Louie Walsh told me I “did a good job”, good complement from such a well-respected but ferocious critic.

photos to appear shortly on Flickr

Great to hear good things about the backup trust’s valuable mentoring service in the Guardian newspaper. Good Work Guys

lots of love and gratitude from Ellen and I

enjoyed every minute of last night’s gig in Brixton, Flight facilities bringing some fresh music and great Aussie vibes. Great to meet you guys. enjoy the rest of the tour

conscious I haven’t updated in a while

really enjoyed the backup charity ball, great chance to catch up with friends and raise money for a great cause www.backuptrust.org.uk

very busy with interesting work and tight deadlines, web development is interesting due to fast technology changes

planning Ellen’s 30th celebrations which should be good fun

looking forward to family time over Christmas and Gigs including “flight facilities”, “basement jaxx” and the big 7 rugby game at Twickenham

all the best.

Unfortunately the below letter was refused and deemed not sufficient to open a review on the case!

—-

To whom it may concern,

I’m writing to request a review of the refusal of appeal for case number xxxxx. The following is a copy of the reasons for refusal:

“Adjudicator’s Reasons

The Apellant said that he stopped in an emergency to unblock his catheter. The Authority rejected the representations, pointing out that somebody boarded the vehicle.

The Appellant appealed, he added that he was picking up a specialist carer.

The Appellant did not explain why he could not have found a lawful parking place to clear his catheter. He has not explained the co-incidence that he stopped in an emergency (i.e. no choice as to the location) but at the same time picked up a passenger. When one views the CCTV recording, one can see that the passenger walked towards the Appellant’s vehicle when it pulled up but instead of boarding the vehicle straightaway, especially when there was supposed to be an emergency for which her assistance would have been valuable, she stayed on the pavement attracting the attention of passers  by and engaging in conversation with them. This did not fit with the account.

I am not satisfied that there was an emergency situation. I am refusing the appeal.

Mr A Non

Adjudicator”

In response to this explanation I would like to firstly concede that there was not sufficient explanation provided in my appeal. It is a complex situation and a significant amount of explanation is required.

Tetraplegia is a medical term describing the health condition of someone living with paralysis that affects all four limbs. A significantly risky feature of tetraplegia is called autonomic dysreflexia which results in heightened blood pressure occurring very fast which is not self-regulating and can lead to aneurysms and other blood pressure related injuries. Most tetraplegics carry Infedipine, a medication that can be used to regulate BP in these situations to avoid associated health risks (although when taken can result in a side-effect of significant headaches). One of the most common triggers of autonomic dysreflexia is the blocking of indwelling catheters, this can  be due to a buildup of calcium -related sediment within the catheter. Due to the lack of weight-bearing in tetraplegics experiencing paralysis, reduction of bone density via decalcification results in extra sediment being passed in the urine and can result in regular catheter blockages. As stated earlier if these are not rectified quickly via a bladder washout or catheter change, the tetraplegics can experience autonomic dysreflexia and dangerously high blood pressure levels in a very short period of time (a matter of minutes).

The above description of the condition and related side effects should be sufficient to explain the emergency experienced and the need to stop immediately. As I am unable to detect the level of urine inside my bladder, when the catheter blocks it is impossible to detect immediately and only when the pressure inside the bladder results in the triggering of autonomic dysreflexia  manifesting itself in sweating, skin redness and intense migraines am I able to detect that something is wrong.

As a result of my complex medical condition and inability to use any of my limbs I’m attended by two live-in carers 24-hours a day. These carers are trained by a specialist agency to deal with health concerns of a person with a spinal injury. On the day in question I was travelling with a single carer and my wife in my car after having dropped off a carer at her chosen destination and was en route to pick up her replacement. The catheter blockage occurred close to our destination but before we could find a suitable parking place, hence the emergency stop. The carer already inside the vehicle had already started to perform the procedure of a bladder washout and my wife contacted the carer waiting to be picked up to inform her of our location. The carer awaiting pickup walked to our car and waited as we finished the required procedure (which can be safely performed by a single trained person).

It should be understood that although the consequences of mishandling such an emergency situation are great it unfortunately is not an uncommon occurrence and as such it is often rectified in a calm manner by a single individual. Such an event does not necessitate everyone associated behaving in a panicked manner. In fact it is desirable for those nearby to behave normally.

Many thanks for your understanding.

Yours sincerely

Tom Nabarro

BBC iPlayer – The Andrew Marr Show – 26/10/2014.

he forgot to mention the incredible work of the designer of Henry IV all female production at the Donnmar Warehouse theatre – Ellen Nabarro

Email thread regarding wheelchair access policy which mandates that wheelchair users be segregated away from the general public on small raised platforms at gigs.

From: Tom Nabarro

To: Nigel Downs

Subject: Re: Super You + Me Disabled Access Booking

Hello Nigel,

I appreciate your reply.

The information you provided about club nights is reassuring although this definitely wasn’t made clear in previous conversations with your colleagues.

I don’t quite agree with your assessment of the health and safety issues with respect to the dangers wheelchair users pose to other customers. I attend many festivals and gigs and enjoy being in the thick of it and have never caused any more harm to others than the next able-bodied person. Whilst I appreciate that my personal experience cannot be grounds for a general health and safety policy I would be interested to hear an explanation of why you have differing policies on club nights and gigs.

With regard to crowd lateral movement, this is obviously an issue with regard to wheelchairs not being able to move sideways and in the case that there is significant crowd movement I would not expect to be at the front middle of the crowd.

Having considered your concerns regarding the above issues I would like to explain why I think it is a mistake to force wheelchair users into segregated platforms away from the general crowd.

Whilst you say that friends are allowed onto the platform, “numbers permitting”, in my experience the platforms are fairly small and it’s unusual to be able to get more than one friend or assistant on the platform. Nonetheless the fact that you have to rely on chance to be able to spend time with your friends at a gig is unacceptable.

Disabled people in general have a hard time overcoming social isolation, it takes a concerted effort to battle against general prejudice and for some the effort is just not worth it. For people who do make the effort to get out and socialise and challenge preconceptions for their own as well as other disabled people’s benefits, it’s a real “kick in the teeth” to be told that they can not be with the general public and enjoy the ambience and that they can only socialise with their “carer” who is usually paid to look after the personal needs of the “client”.

I go to a gig to be with friends, not to hang out with someone I am forced to rely upon 24-7 due to my complex needs.

I would be quite happy not being right at the centre of the dancefloor but being forced onto a raised platform away from the general public is a human rights infringement.

I feel like your policy over health and safety has not been weighed accurately against the well-being of your disabled customers.

This policy is not one that I have encountered other than at the O2 Academy Brixton & Arena and the forum in Camden.

I hope you can consider my arguments and look forward to hearing your reply. In the meantime I will continue to be vocal about these issues on Twitter, other social media and charity channels.

Regards,

— Tom —

From: Nigel Downs

Subject: RE: Super You + Me Disabled Access Booking

Dear Tom,

Apologies for the delay in reply.

We believe at the O2 Academy Brixton that we provide an excellent service to our disabled customers. We work closely with Attitude is Everything and believe the way we operate is in line with other large venues.

In relation to allowing wheelchair users on to the main auditorium floor, we also have to take into account the health and safety of all customers. If an incident happened within the crowd and lateral movement occurred, then not only is the wheelchair user at risk, but so would other members of the audience.

We provide a raised platform like the O2 Arena, Wembley Arena or football grounds, but we allow all wheelchair users friends to join them for the best view in the house, numbers permitting. Our disabled policy is no different to any other venue. Wheelchair users at the O2 arena cannot go onto the standing area. In relation to the information we provide to wheelchair customers at the time of booking, we’ll review this to ensure that it is clear.

In relation to club nights, we do allow more flexibility. We allow wheelchairs on to the flat floor but ask that wheelchair users stay to the side for everyone’s safety. I understand that the duty manager on the night did speak to you at her earliest convenience, and ensured you could get on to the auditorium floor.

As a major venue, we do try to ensure as much freedom for our wheelchair users as feasibly possible but these have to be set against the Health and Safety of all customers.

Best Regards,

Nigel Downs | General Manager | O2 Academy Brixton

Subject: Re: Super You + Me Disabled Access Booking

Absolutely please

sorry to hear it was cancelled, do you know why

also I would like to ask how best to register a concern about the disabled access policy at the O2 Academy Brixton

I am a frequent customer of O2 Academy venues and a wheelchair user and have been really disappointed on a number of occasions at Brixton due to being forced to sit in the wheelchair enclosure segregated away from my friends. I don’t tend to go clubbing or to gigs on my own with a single assistant, therefore it’s quite a shock being told I can’t sit with my friends/other people. I haven’t had this experience at any other venue and wonder why it is so strict. Due to these experiences electric Brixton is now my venue of choice and I don’t plan on going to O2 Academy Brixton in the future. I enjoy going to the O2 Arena, O2 Academy Oxford and Bristol and have had very good experiences there.

I have heard that my friend Lucy (copied) has also had negative experiences in relation to being a wheelchair user at the O2\ Academy in Brixton.

I hope these feelings can be related to someone in a position to be able to address them.

Thank you very much for your email

Regards,

— Tom –