The beauty of tonight's sky is such a sharp contrast to the sadness in my soul. How did we get here? When did it happen that the Britain we thought we knew slipped away, subtly shaded by something darker, more sinister and so frighteningly real?
Tonight I made a promise, a promise I was so saddened but not at all shocked to hear asked, a promise I hope very much never to have to keep, but a promise all the same. I had to promise that if anything should happen to one of the most courageous survivors any of us can imagine that I would make sure everyone knew who is responsible.
But, most of us? We already know, and even those who don't are beginning to shuffle with disquiet. We look away, those of us safe enough, secure enough to have enough. We look away so as not to have to face the fear that we are all innately vulnerable and that a need for social security does not make us lesser, or other, but fundamentally human. '
And whilst we all look away, I broke my heart listening to another seriously ill person being broken in the name of welfare reform. And I made the only promise I could - that if it ever comes to it I will make sure everyone knows who's responsible,
Last month I went to London to record 'Inside The Ethics Committee' for Radio 4, hosted by Joan Bakewell. It was as ever a vomit themed and fascinating experience - I'm told 'Can I have a vomit bowl just in case please' is one of the more unusual studio requests!
As I've already been asked, I'd like to clarify - I'm not the case study Rosemary and I'm not pregnant! However, Rosemary and I are almost the same age and we both have EDS - this meant I felt a huge sense of responsibility to Rosemary when we were making the programme - I didn't necessarily think the decisions Rosemary was making were always the decisions I would make for myself but I did feel it was vital to defend her right to make those decisions for herself, whatever they might be.
The subject of assisted conception, parenting and disability is obviously complex and sensitive, but I hadn't expected this to be the most challenging media recording I'd ever done...which is entirely my own fault for not thinking things through before I say yes to them! I am glad I said yes without thinking though as it was also one of the most constructive and interesting discussions I've ever participated in - having an all female panel and host definitely helped that. There was simply no-one looking for any kind of conflict but to explore with each other the different issues and potential consequences.
It was also fascinating to consider Rosemary's case from within a social model perspective - I talked to lots of disabled people to get their perspectives before hand, but after much deliberation and many lengthy conversations we all agreed that it simply wasn't possible to fully apply the social model (the theory that disability is caused by an inaccessible world rather than an inherent medical model impairment) to Rosemary's situation because she has some life threatening medical issues that simply won't work within a social model framework.The social model applied in some places very effectively and up to a certain point which always ended in 'but there are no barriers we can remove to ensure her participation without actually killing her' and frankly most of us were unsure that was a terribly social model solution to the situation..
As so many people use this blog as a place to find information about Ehlers Danlos Syndrome I think its really important to point out that for most women with EDS pregnancy does not present the same level of risk as it does to Rosemary due to her iatrogenic* complications.There is lots of helpful information about HMS or EDS and pregnancy on the Hypermobility Syndromes Association website.
I'm really looking forward to hearing the finished debate - that's totally different from participating in it! I hope the intricacies we all considered come across and demonstrate just what a difficult job ethics committees in these situations do...and makes the various ethics committees realise that if they are assessing ethics related to disability in relation to clinical decisions that they should never do so without including disabled people as part of that ethical panel.
When listening please bear in mind that Rosemary is a real person, the discussion is about her real experiences and challenges and please be mindful in any comments that Rosemary herself may read what you are saying.
Inside The Ethics Committee airs Thursday 8th August on BBC Radio 4 at 9am. It'll be repeated and available afterwards on iplayer - I'm not sure how long the transcript versions take but all the older episodes have transcripts available so they will appear. For those outside the UK who wish to listen it might be worth contacting Radio 4 to ask if they have any plans to put the series onto the World Service.
*Interestingly iatrogenic is not a Radio 4 approved word - too difficult. Though to be fair that could well be BBC code for 'you can't pronounce it love so don't say it eh'!
It used to be so easy writing a blog about living with disability - people do funny or silly stuff, write it up, other people read it and laugh or gasp at said silly stuff, job done. I was always careful, just in case someone recognised themselves in the pieces I wrote, and when I lost my anonymity I removed lots of old posts as it wasn't fair to have written about people who had no right of reply. So that's why, since the blog-worthy incident on Saturday I've been wondering how I can write it up honestly when some of that honesty is about people who may read this having behaved badly? It seems the only way is to be considerate but speak the truth.
It all went really smoothly initially - I know the Lime Street assistance staff and they know me, ensuring I'm on the train with no problems - just like any other journey to London. I'd booked my tickets early, reserved the wheelchair space and the seat opposite so I can transfer out of my uncomfortable scooter. I'd even, unusually for Virgin Journey Care received an email confirming that I'd booked that particular wheelchair space and seat. So, when a lady of about my age arrived on the train just moments before departure it was obvious something had gone wrong.
And it had, we'd both booked the same seats. Instead of informing the lady that the seats were already booked when she rang journey care someone simply left my reservation on the wheelchair space and added her PA's to the additional seats. That meant I was booked in, the PA's (her husband and an employed PA) were booked in but the lady using the powerchair was not.
The whole carriage was busy and two women using mobility equipment plus one set of rather pissed off carers meant we were attracting alot of attention. It was immediately obvious that the other lady had to have the wheelchair space - she was a powerchair user who couldn't transfer into another seat whereas I can. It was also obvious that if we didn't figure out a solution quickly between us all that the train would need to leave and we'd be put off the train. The train staff did their best to sort it out, as did I and the other wheelie using lady but the attitude of the people with her, whilst totally understandable was unacceptable and left me feeling really vulnerable and threatened. Had GG who usually puts me on the train been there, there would have been a full on fist fight given the attitude of the other carer's - neither GG nor the other lady's husband were the type of men to back down and neither of us would have managed to control protection fuelled testosterone fury. So, intimidating and upsetting though it was to be on my own, it was probably better that way.
The most infuriating part of the whole situation was that the other lady and I had immediately started to work out between us how we could share the available space - she had to have the wheelie space, there was no question, but fortunately as we were both very petite we could just about manage to re-arrange so that she had room to turn round, and we could squeeze in my scooter so that people could pass. The only reason we were able to do this was because it was a weekend and there were no catering trollies needing to get through - people could pass but on a weekday one of us would have been put off the train.
However, the lady's companions were having none of this 'we'll share' plan which the other lady seemed as ok with as I was. The people in the seats immediately behind offered to move, but the PA's were still cross and wanted to insist I was in their seats and had to move. The other lady had already seen the confirmation email I showed her and knew it was a genuine mistake but the other's acted like I was just one of those people who sit in a wheelchair space and refuse to move.
Things culminated when the PA said to me "I'm not being funny, but you can walk a bit and xxxx can't walk at all, so you have to move" Having exchanged horrified glances with the other wheelchair user I managed to calmly but firmly reply that I was on my own with no support and couldn't move further from the toilet, whilst they were two people to support the other wheelchair user and that it was not a competition as to who was more disabled, but that there was no reason the two of us couldn't share the wheelchair table and the PA's sit immediately behind us. I'd checked with the other lady that she did not have to have her PA's immediately next to her and she was quite happy to share the table with me with her PA's immediately behind me in her line of sight.
The train moved off and that settled things - she got the space, we got my scooter moved and for the rest of the journey she and I had a really nice chat while her companions continued to glower. It was stressful, upsetting and degrading for us both, but additionally for me, enormously intimidating. I understand the attitude of her companions, I've seen a similar attitude occasionally amongst some of my friends when access has failed and the general public are being deliberately unhelpful, but this was slightly different - I was a disabled woman on my own and of all people I sort of expect other disabled people and their staff to understand. The other disabled lady and I understood each other perfectly, but for some reason her companions thought it was acceptable to be aggressive and intimidating not just to a woman alone, but another disabled person.
Given the potential for the other people involved to read this blog post I can't take the easy route, call them wankers and be dismissive of their viewpoints. So, instead I'll just say to all PA's, carer's, family or friends of disabled people - please bear in mind the affect of your actions on other disabled people, not just the one you are with. We all understand the frustration, we all live with it, so that means that of all people we should treat each other with that compassion and understanding, not go off like a bottle of pop at the first hint of a problem!
A couple of weeks ago I went to London to record 'Inside The Ethics Committee' for BBC Radio 4. The panel discussion was all about the ethical dilemmas in an anonymised but real life case of a lady called Rosemary who has Ehlers Danlos Syndrome and wants a baby.
It was a fascinating and challenging experience which hopefully will come across in the 45 minute discussion hosted by Joan Bakewell.
Inside The Ethics Committee airs on the 8th of August at 9am and will be available after that on iplayer here
Yesterday I had my first, formal job interview in more than a decade. It went well...I think, although my criteria for 'well' may not be quite those of the typical job seeker. For me, well, meant that I did not throw up in front of or on any of the interview panel. This is a good thing as apparently vomit can be a tad offputting in an employee.
We got off to a good start with the water, offered to me in those light weight, disposable plastic cups which are definitely designed to do nothing except fly independely across a room, showering their contents as they go. I'm not sure 'do you mind if I stick to using my plastic bottle' is a standard interview question, but it really should be.
I also did not fall over, well, not completely fall over anyway - judging by the haste with the chair of the interview panel displayed in attempting to reach me before I tried to get out of my seat, falls risk was paramount in their minds.
When the noise of dislocating joints was too loud to ignore I tried to hide my grimace of pain with a smile. That kind of got us all through the first dislocation which was only a finger when the panel all twitched and asked if I would perhaps like a rest. We soldiered on and clearly dislocation training worked as when I managed to pop back both shoulders, elbows and multiple ribs stretching with the impressive staccato sound effect of multiple gun fire only the panel twitched. I was cool, calm, laid back and professional throughout. Honest. Hopefully the recording did not pick up my muttered cursing at the pain or the nauseated expression of the panel members.
Being aware that body language is an important part of any interview strategy I tried really, really hard to have some that wasn't rude. Sensibly I wore a dress long enough to avoid potential panel pant flashing incidents.That worked quite well. For keeping my pants hidden. Less well on the not flashing my bra at the panel when it turned out the only way I could get up from the chair was to lie my entire upper body on the table and lever myself up. Fortunately one panel member was busy sprinting across the room to assist me and the others politely averted their eyes from my bra. I felt reassured that at least I had on a bra, and that it was both pretty and clean. I'm sure they'll give me the job on that basis alone - 'can manage to find and wear clean underwear' is definitely a formal requirement in most jobs.
The 'managing to remain upright in a seat' part of the interview was a challenge too far for me and I appreciated the panel's polite response to my constant wiggling, popping and occasional slumping onto the table for a rest mid sentence.
The interview ended on a wonderful question 'Did Kanga tell you about that?' to which the only obvious answer is 'Kanga facilitated communication'. Sadly I was too distracted by intense pain to manage something quite so coherent but I was very glad to see the panel respected Winnie The Pooh as much as I do.
Weirdly, despite all that I enjoyed the experience. I know, I know, it really is time to address getting out more often to do things classed as 'fun', job interviews not being top of most right minded people's idea of a good time. I think the panel enjoyed it too as one member generously offered to let me throw water over her anytime, but specified no hot tea. Perhaps they've been reading my blog?
Since being returned home I have done nothing but sleep, take oramorph, sleep, take more oramorph and whine pathetically about how bad I feel. When I was leaving the interview it did occur to me that potentially this opiate/sleep/pain cycle might impair my performance in any job and that perhaps even Atos had a point finding me unfit to work. Frankly that thought was obviously running through the mind's of the panel too so we did have a little chat about the feasability of the job for someone in my position. They were very encouraging about time to rest and recover though so that was kind. They also had a better mastery of body language than me too as they clearly projected 'I think you should probably be in bed love' without any need for a Babel fish translator.
