Disabled People’s Summit – by Jennie Musson

As the International Day of Disabled People (3rd December) dawns upon us, I thought I would honour this auspicious occasion by writing a blog about when a small but select group of us from SPECTRUM went to London to a Disabled People’s Summit. This group consisted of Berni Vincent from the Community Navigator Team, student social worker Paula Pace, Ross Smith from the Journey to Employment project and, of course, yours truly from the membership and information side of the fence. This event was hosted by DPAC (Disabled People Against the Cuts) and The People’s Assembly. I will be writing about the Independent Living workshop Berni and I attended as space is limited and I thought this would be the topic most people would be interested in.

Travel to the venue was trouble-free, with all trains/taxis etc behaving themselves in spite of the inclement weather. The event was very well-attended, with approximately 200 attendees from Bedford, to the Midlands, to Southampton and London.

The SPECTRUM mob: from left to right: Ross, Berni, Paula & Jennie

The SPECTRUM mob: from left to right: Ross, Berni, Paula & Jennie

 The day started with an opening plenary from John McDonnell, the Shadow Chancellor, via video clip and the excellent Bob Williams-Findlay, a well-known contributor to the Disability Arts and Cultural movement and finally, Ellen Clifford from DPAC. This was followed by 7 workshops, covering accessible transport, employment, inclusive education, independent living, mental health, social security and violence and abuse against Deaf and Disabled People. You could choose which workshop you wished to attend, but as there were so many interesting topics to choose from, we had problems deciding which ones we wanted to go to! Berni and I headed off to the Independent Living workshop, with Ross going to the Employment workshop.  We started off with introductions and sharing what we thought the problems were and what was essential to Independent Living. The main consensus was that the issues to be tackled were:

-cuts to people’s support packages

– the closure of the Independent Living Fund (ILF)

– cuts to social care generally

– the institutionalisation of people with Mental Health issues

 – Local Authorities failing to take responsibility for the impact of the cuts.

– Inaccessibility of consultation information

Many people spoke passionately and eloquently about the issues they were facing and the anger and frustration they felt was palpable.   It seemed to many of us that the concept of Independent Living has been shifting over the last 8 years so that it now seems to apply to a privileged few in that many people are having to give up their care as they cannot afford to pay for it at the same time as essential services are being cut and withdrawn. The second half of the workshop was devoted to outlining what potential solutions we could come up with to tackle these problems and reclaim the idea of Independent Living.

The solutions we came up with were:

– the right to Independent Living to be enshrined in law

– an Independent Living Service free at the point of service, funded by direct taxation and run by Disabled People

– the national reintroduction of the Independent Living Fund (ILF)

– Independent Living for ALL

– hold politicians to account

– parity of esteem between visible disabilities and impairments and Mental Health and Hidden Impairments

– accessible housing at affordable prices

– co-production with Disabled People at every level

– access to advocacy for Disabled People

– Disabled People setting the “Gold Standard” for Independent Living in terms of information and housing and forcing the government to accept it

-Getting people out of institutions and back into their communities

After lunch and networking, there were more workshops and feedback from the day, before attendees departed for their home destinations, full of enthusiasm for the long fight ahead. There will be a follow-up conference in Brixton on 25th November which will flesh out what a National Independent Living Service will look like and how this can be achieved.

I often hear it said how people no longer have any fight left in them to resist what is happening, but it is an encouraging sign that I met many Disabled People that day who are more than up for the challenge and it will certainly be interesting to keep an eye on future developments as they unfold.

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When Devices go Bad – or The Pump too Tough to Die – by Jennie Musson

We all use technology in our lives, to a greater or a lesser extent, from the ubiquitous mobile phones, to our Digi-boxes and coffee machines. Many of us also rely on technology to manage our impairments or medical conditions. This technology can be incredibly effective in assisting us to stay well and enabling us to have as normal a life as possible, but what happens when technology “goes bad”? Well, one of our staff members got to find out – and here is her experience….

When I think of technology “going bad”, I must admit that one of the first things that springs to mind is either the film, “I Robot”, or the (in)famous scene in “The Young Ones” where washing machines rebel when faced with Neil’s sweaty socks.

What brought me to write on this subject was my own encounter with some new technology to help me manage my type 1 diabetes. I have been an insulin pump user since 2007 and, like many people, have found the benefits of insulin pump therapy have revolutionized my care and improved my quality of life, compared to multiple daily insulin injections.

Having had my current insulin pump almost 6 years, it was decided by the good folk at Bournemouth Diabetes and Endocrine Centre (BDEC) that I was in need of an upgrade and would I like to trial a new insulin pump and sensor system for a couple of weeks. To say I bit their hands off would be a massive understatement, as in the wonderful wacky world of type 1 diabetes, hardly anyone ever gets offered the chance to try out a sensor system on the NHS, as they are prohibitively expensive. Sensors are meant to be used  in conjunction with an insulin pump, continually monitoring blood glucose and sending these results to the insulin pump. When blood glucose is about to fall too low, the insulin pump stops delivering and alarms, which is a brilliant feature for people (like me) worried about having very low blood glucose in their sleep and potentially going into a coma. This is a safety feature, supposed to give people peace of mind and better control with no dangerous lows. So far, so good.

I spent about four hours at the hospital, meeting the lovely smiley medical rep and discussing the system with the diabetes nurse and left, clutching two large carrier bags with my pump swag and with a nice shiny new sensor and new pump attached to me, feeling nervous but quite smug at the same time.

Things were going great, with the pump alarming and vibrating before the blood sugars hit rock bottom and I was very pleased that everything worked as it should.

It wasn’t until that night when the pump and sensor bit back. It started, innocuously enough, with the pump alarming and telling me insulin had been suspended, as blood glucose was too low, although I did not feel ill as I usually do when this happens. I checked my blood – not low at all. I thought this was a bit wierd, but cancelled the message and went to bed, blissfully unaware of the techno-hell that night would bring.

“Beeeeeep” “Brrrrrrr” “BEEEEEEEP!!” woke me up from deep slumber at 12.30am. Completely disorientated, I fished the pump out and jabbed at it while squinting short-sightedly at the display. “Insulin suspended, low blood glucose”, the thing helpfully informed me. Cursing, I did a blood test – nowhere near low. Muttering wrathfully, I cancelled the message and went back to sleep.

“BEEEEEP! BRRRRRR! BEEEEEP!” woke me again half an hour later with the same message. Again tested my blood as instructed by the electronic tyrant – with the same results – no lows. In fact, too high. Yet again, I cancelled the message and went back to sleep , convinced that Chairman Mao had nothing on this insulin pump.

And so it went on: “BRRRRRR! BEEEEEEP! BRRRRR!!” all night long.

Finally, when it had woken me up for what felt like the 18th time at 5am, I dragged it out, shouting “WHAT???” at the pump screen, as though it were a recalcitrant toddler. I briefly considered hurling it out of the window, but was forced to dismiss this idea as it was unfortunately attached to me and would have resulted in a couple of broken legs.

Two hours later, the accursed alarm started again, this time telling me to change the sensor. This was the final straw. Enough was enough. I marched downstairs, ripped out the sensor and disconnected the pump, reverting to my old (and wonderfully silent) one. Ah, relief! Even then, the thing would not die and kept beeping and vibrating in its box where I had carefully placed it. I wondered whether it would still be heard if I buried it under 2 feet of concrete, but reluctantly conceded that BDEC would want it back at some point in the future. At least with the monster stashed in its box, I could walk away and not have it follow me, wailing and vibrating, like a hyperactive child in a sweet shop.

I remain unsure as to whether the issues I had were mechanical or whether they were a result of my inexperience with the system, but I intend to try and follow the old maxim “At first, if you don’t succeed, try again” (at least when my eye bags have receded). After all, it’s a matter of pride – who likes to be beaten by a mere machine?