Minister supports view that having a disability is worse than dying of cancer

Here’s the thing about Cervical Cancer: It can kill you. Quickly. Painfully. While you’re still young.

Here’s the thing about HPV (Human Pappiloma Virus), a causal factor in Cervical Cancer: You can contract the virus via skin-to-skin contat. You don’t have to have unprotected penetrative heterosexual sex in order to contract it.

This is a fact I was unaware of until I was in my thirties, and I thought I was very well informed about safe sex. I was well informed – about safe sex for heterosexual and male homosexual sex. I new about condoms. I didn’t know about dental dams.  I didn’t know that I was at risk when having unprotected sex with my girlfriend. In particular, a promiscuous ex-girlfriend who went on to develop pre-cancerous cells in her cervix after we had split up. Thankfully, I’ve always attended for smear tests under Cervical Check, and the lab used by my health centre happened to check for HPV at the same time as examining cells from the smear. Not all labs do this, apparently.

Here’s the thing about Gardasil, the HPV vaccine that has been made available to all teenage girls in Ireland for the last seven years. Even IF it caused the ME, Chronic Fatigue Syndrome and POTS that some people believe it causes, THESE CONDITIONS ARE NOT WORSE THAN DYING OF CANCER. To put your daughter at risk of dying of cancer in preference to putting them at (an unproven) risk of a chronic, disabling disease is to suggest that MY life is not worth living.

Minister of State with responsibility for Disability Issues, Finian McGrath TD, publicly rolled in behind this view. He has since back-pedalled furiously, but that does not undo the damage he has done in putting young women at risk of cancer while simultaneously supporting the view that dying of cancer is preferable to having a chronic health condition in Ireland. There may well be times when I might hyperbolically support this view, but I would still vaccinate every teenage girl in the world with Gardasil.

The health service here has to take some of the blame for the false connection having been made between receiving the Gardasil vaccine and the onset of ME, CFS and POTS symptoms. Chronic fatigue and chronic pain syndromes often present in adolescence. My chronic pain cymptoms were routinely dismissed as “growing pains” throughout my pre-teen and teenage years. Having reached 40, I don’t think I’ve any growing left to do (except horizontally), yet the pains are there, the pains are worse, and they have disabled me. What’s more, I have continued to feel ignored and dismissed by the majority of health professionals I have seen down the years. Of those I have seen by whom I haven’t felt belittled or patronised, only one medical professional has even attempted a medical intervention to improve my symptoms, and one other attempted to get me a more specialised and specific diagnosis than “fibromyalgia”. So when a grown woman using a wheelchair and walking aids is treated this way by our health system, I can understand the frustration and panic of parents watching their teenage daughter struggle with similar symptoms.

Another chunk of responsibility must be laid squarely at the feet of Fine Gael arrogance.  At the launch of 2017’s vaccination campaign in August, Minister for Health, Simon Harris, said that parents should “butt out” (sic.) of medical discussions unless they were medical professionals. The director general of the Health Service Executive, Tony O’Brien, described social media campaigns like the parent group, Regret, as “emotional terrorism”, and went on to describe how members of the public were being duped by fake news on social media.  This kind of language is confrontational, patronising, and in no way seeks to bring concerned parents on board. These statements tell concerned parents that they are stupid and ignorant, that they should just shut up and listen to what the clever men are saying, and should stop trying to interfere in the important businesses of state.

I cannot help but wonder if one factor in this kind of response is that the origin of the complaints is teenage girls. Are their experiences being dismissed as “hysteria”? There are many health issues that affect more women than men which go uninvestigated, under-diagnosed and untreated. Chronic pain and chronic fatigue syndromes are very high up that list. Whatever the motivation or unconscious assumptions behind these comments, I cannot see the use of phrases like “butt out” and “emotional terrorism” making a worried parent change their views.

And so these comments do nothing to address the serious issue of a drop-off in uptake of the HPV vaccine – a vaccine for which we fought a decade ago. Vaccination of teenage girls has dropped to a worrying 50%, despite the reporting of associated symptoms also having dropped.

But I would still much rather be in pain and unable to run, dance and ride horses for the rest of my life than have cervical cancer. Yes, cancer is generally not the death sentence it once was. Yes, survival rates and quality of treatment has improved beyond recognition. But it is still a painful, life-altering, misery-making disease that can end your life long before you’re ready to die. It strips you of energy, the treatments make you feel like hell and everyone around you feels helpless and miserable too. Given the choice, I choose to keep fighting from where I am – in a wheelchair, protected from HPV.

Note:

For the background to this story, please follow the links within the article. Some of these links may be subscriber-only content from the Irish Times. Apologies if you are unable to view the specific articles.

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Updates: MY GOVERNMENT IS KEEPING ME UNDER HOUSE ARREST

Since publishing this blog post on Friday, I have done this radio interview with local station, Ocean FM:

Then, sitting in the doctor’s waiting room this evening, I heard this segment on RTE Radio 1’s Drivetime:

DriveTime – RTE Radio 1 – Monday 22nd August: Home Care Services

I have e-mailed the programme to point out the connection between the two stories. However, I don’t use Twitter! So please feel free to tweet @DriveTimeRTE

ORIGINAL POST:

Here is a letter I sent to the Physical and Sensory Disability service in the North-West this week:

 

12th August, 2016

Re: Emergency increase in Personal Assistance hours for client with multiple disabilities

To whom it may concern:

I am writing to request an urgent increase in Personal Assistance (PA) hours until early 2017. I am visually impaired and have restricted physical mobility, meaning that I need to use a guide dog and a powerchair to leave my own house for medical appointments, shopping, banking and participating in society. I have outlined the nature of my disabilities and their impact on my daily life in the attached Disability Impact Statement, and my specific requirements from a Personal Assistant in the attached form.

My current guide dog has had to retire due to health concerns. Due to my unusual set of needs, a succession dog will not be available to work with me until early 2017. This leaves me with severely restricted mobility in the interim.

As well as providing sighted guidance for mobility outside the home, my specially-trained dog provided additional mobility assistance within the home. The loss of this essential part of my independent living toolkit therefore has a significant and acute impact on my daily life.

I live alone, and currently have 15 PA hours per week, which are almost entirely used for assistance with personal care, housework and, to a minimal degree, accessing print materials within my own home. I already have very limited access to any assistance with transport or tasks outside the home. Having no assistance dog now means I am restricted to a few essential journeys very close to home (within 1-2 km) on familiar routes with good environmental accessibility.

In my current situation, I cannot visit my parents in Dublin, visit any friends’ houses or participate in many recommended theraputic activities e.g. a group singing project organised by the mental health service to which I was referred by the occupational therapist. If I drop, spill or break something on the floor, I may have to wait for 23 hours before a PA is available to clear it up or find essential items for me. When I need to make a medical appointment, I have to wait until a friend with a car is present before I can arrange a time that I can attend.

The interaction of my visual impairment with my mobility impairment means that I am in an unusually challenging position. These impairments combine in unique and often unforeseen ways to create complex barriers to my participation in society and living independently. As such, they should be understood as a form of “third impairment”, with needs distinct from people with only a physical or a sensory disability. The combination of Personal Assistance, powerchair and guide-dog is an essential tool for my independent living. Without that special combination, I am unable to leave my front door by myself. Without a working guide-dog, I urgently need a much higher degree of Personal Assistance to maintain my level of independence.

Thank you for your consideration.

Yours,

Isolde Carmody

 

Within 24 hours of writing that letter, my cat puked somewhere in my bedroom. I couldn’t see where, but boy could I smell it! There would be no PA available to clear it up for me for another 18 hours. Despite keeping my bedroom door closed (the smell was truly awful), my retired guide-dog got in there and helpfully licked up some of the vomit. Since I didn’t know where the vomit was, or whether the dog had eaten all of it, I slept on the sofa that night. The next day, my retired dog was off his food, and had diarrhoea, thankfully in the garden. My PA that morning couldn’t find the vomit, partly because she doesn’t understand animals, so it was 48 hours later that the last of the vomit was cleaned up.

Today, I was told that no new hours had been approved for me. I can’t leave my house. And I won’t be able to go anywhere further than 1 or 2 km until some unspecified time in 2017.

THIS IS ILLEGAL DETENTION

MY GOVERNMENT IS KEEPING ME UNDER HOUSE ARREST

Here is a letter I sent to the Physical and Sensory Disability service in the North-West this week:

 

12th August, 2016

Re: Emergency increase in Personal Assistance hours for client with multiple disabilities

To whom it may concern:

I am writing to request an urgent increase in Personal Assistance (PA) hours until early 2017. I am visually impaired and have restricted physical mobility, meaning that I need to use a guide dog and a powerchair to leave my own house for medical appointments, shopping, banking and participating in society. I have outlined the nature of my disabilities and their impact on my daily life in the attached Disability Impact Statement, and my specific requirements from a Personal Assistant in the attached form.

My current guide dog has had to retire due to health concerns. Due to my unusual set of needs, a succession dog will not be available to work with me until early 2017. This leaves me with severely restricted mobility in the interim.

As well as providing sighted guidance for mobility outside the home, my specially-trained dog provided additional mobility assistance within the home. The loss of this essential part of my independent living toolkit therefore has a significant and acute impact on my daily life.

I live alone, and currently have 15 PA hours per week, which are almost entirely used for assistance with personal care, housework and, to a minimal degree, accessing print materials within my own home. I already have very limited access to any assistance with transport or tasks outside the home. Having no assistance dog now means I am restricted to a few essential journeys very close to home (within 1-2 km) on familiar routes with good environmental accessibility.

In my current situation, I cannot visit my parents in Dublin, visit any friends’ houses or participate in many recommended theraputic activities e.g. a group singing project organised by the mental health service to which I was referred by the occupational therapist. If I drop, spill or break something on the floor, I may have to wait for 23 hours before a PA is available to clear it up or find essential items for me. When I need to make a medical appointment, I have to wait until a friend with a car is present before I can arrange a time that I can attend.

The interaction of my visual impairment with my mobility impairment means that I am in an unusually challenging position. These impairments combine in unique and often unforeseen ways to create complex barriers to my participation in society and living independently. As such, they should be understood as a form of “third impairment”, with needs distinct from people with only a physical or a sensory disability. The combination of Personal Assistance, powerchair and guide-dog is an essential tool for my independent living. Without that special combination, I am unable to leave my front door by myself. Without a working guide-dog, I urgently need a much higher degree of Personal Assistance to maintain my level of independence.

Thank you for your consideration.

Yours,

Isolde Carmody

 

Within 24 hours of writing that letter, my cat puked somewhere in my bedroom. I couldn’t see where, but boy could I smell it! There would be no PA available to clear it up for me for another 18 hours. Despite keeping my bedroom door closed (the smell was truly awful), my retired guide-dog got in there and helpfully licked up some of the vomit. Since I didn’t know where the vomit was, or whether the dog had eaten all of it, I slept on the sofa that night. The next day, my retired dog was off his food, and had diarrhoea, thankfully in the garden. My PA that morning couldn’t find the vomit, partly because she doesn’t understand animals, so it was 48 hours later that the last of the vomit was cleaned up.

Today, I was told that no new hours had been approved for me. I can’t leave my house. And I won’t be able to go anywhere further than 1 or 2 km until some unspecified time in 2017.

THIS IS ILLEGAL DETENTION

Sad News for Irish Artists with Disabilities and Deaf Artists…

I have just received this via e-mail from the Arts and Disability Forum, from whom I am now even more glad to have just received funding! This is a dark day for Disability Arts and artists with disabilities and deaf artists in Ireland.

 

Arts Council of Ireland withdraws from cross border awards scheme

 

A unique cross border scheme which has benefited dozens of disabled and deaf artists has come to an end after An Chomhairle Ealaion, the Arts Council of Ireland announced it was withdrawing its support.

 

The future is now uncertain for disabled and deaf artists as this signals the end of the Arts and Disability Awards Ireland (ADAI) scheme which has allocated £526,274 to 216 projects on the island since its inception.

 

The decision was revealed in a letter to Chris Ledger, Chief Executive of the Belfast-based Arts and Disability Forum (ADF) which has managed the scheme on behalf of both Arts Councils since the year 2000.

 

The ADF received the news from the Acting Head of Arts Participation of the Arts Council of Ireland. The Council’s letter stated that, as a result of an 11% reduction in its own funding, it has decided to explore alternative ways of meeting the needs of the arts and disability sector in Ireland.

 

Ms Ledger thanked the Arts Council of Ireland for its support over the years, adding that the scheme had been valuable in promoting the careers of disabled and deaf artists.

 

She said: “Of course we understand the pressures on funders but it is sad that the scheme is ending. The ADAI programme has been extremely valuable in providing dedicated year-round support for disabled and deaf artists who are on a professional career path. It has enabled them to compete in a very tough market.

 

She continued “Artists from both sides of the border who have received ADAI bursaries have gone on to win awards, commissions, recording or publishing deals and major grants. For example one of ‘our’ artists was shortlisted for the Hennessey Literature award last year, two albums were released, a Wellcome Trust award was granted and artist who got started with an ADAI grant has won no less than seven international awards in the past couple of years! The funding loss is not about supporting us as an organisation; the ADAI funding wasn’t about us! It levelled the playing field and enabled talented artists to overcome barriers that they face simply because they happen to be disabled or deaf.

 

The ADAI scheme itself is a past recipient of an Aisling award for cross-border co-operation.

 

Chris Ledger pledged that the ADF will continue in its work to promote excellence among artists who are disabled or deaf, saying that the ADF is now in discussions with the Arts Council of Northern Ireland, exploring new possibilities for Northern Ireland artists.

 

She added: “We are saddened that this important cross border work has been lost but the ADF will continue to keep in contact with artists in the Republic and even though we can no longer offer money we will still showcase their work through our gallery space and events like Bounce! Arts Festival.”

 

Ms Ledger started to break the news to artists at the launch of ‘Ebb and Flow’, a new exhibition of landscape paintings at the ADF Gallery in Royal Avenue by talented visual artist Cathy Henderson, a previous recipient of an ADAI grant. Ms Henderson is an ideal example of how disabled artists have forged positive relationships on both sides of the border and gone on to thrive.

 

Born in London and living in Dublin, in 2010 she was awarded a commission from the Museums of Northern Ireland and also an RoI Artist in the Community Award. Since 1998 Cathy has taken part four times in the Great Northern Arts Festival in Canada and in 2011, with funding from Culture Ireland, she held a solo exhibition of relief prints in Whitehorse, capital of the Yukon Territory. She recently completed a commissioned project with the Dublin painter Robert Ballagh to design a commemorative artwork celebrating  the centenary of the 1913 Lockout and the establishment of the ITGWU.

 

Messages of support for the Arts & Disability Forum’s work can be sent to chris@adf.ie.

 

Notes to Editors

 

The ADF has received a total of 390 applications since the ADAI scheme began in 2000. From that, 218 projects from both jurisdictions have been awarded a total of £526,274.

 

For more information: contact Gary Kelly on gary@kellypr.co.uk, 02893340275 or 07581282723

Local Coverage – A Small Step toward World Domination

Here’s a quick interview I did on local radio station, Ocean FM, for World Sight Day, Thursday 10th October. My less-than-15-minutes starts around 42 minutes into the show.

https://soundcloud.com/oceanfm/north-west-today-thurs-10th#t=42:00

Mobility Allowance Scrapped

This was posted by my dear friend, Kiwi Katie, in her blog on her business site, Adaptable Solutions.  Katie works as an accessibility and inclusion consultant, and is not a woman to mess with!  She rants so well that I thought it simpler to re-post what she has written about the scrapping of the Mobility Allowance and Motorised Transport Grant.

Pile of Rubbish

Yesterday, the Department of Health confirmed mobility allowance and motorised transport grants would be scrapped, despite Ombudsman recommendation for them to be widened to include people 66 and over.

Worryingly it has taken 13 years, since the introduction of the Equal Status Acts, to realize that people with disabilities exist both under and over the age of 66. Did they imagine that a disabled driver suddenly would not require modifications to their car, over the age of 66? Or that people over 66 never develop disabilities? Honestly, this notion alone is quite laughable.

Assurances have been made that the €10.6 million fund, formerly earmarked for the mobility allowance and motorised transport grants, will be utilised to meet the transport need of people with disabilities. However if this was sufficient to meet the needs of all people with disabilities then the scope of these supports would have simply been widened, as recommended. No matter which way you look at it, the 5000 people that currently rely on these supports will face cuts.

As a wheelchair user and a business owner, I simply couldn’t live my life or do my job without access to a modified vehicle. As a rural dweller, even if public transport was universally accessible, the nearest inaccessible bus stop is over a mile away and services are limited to twice daily.

Whilst the government is all too willing to consider the financial ramifications of the Ombudsman’s ruling, they seem to be completely ignoring the social implications. People are being made prisoners in their own homes and this will impact on society as a whole.

People with disabilities are: Parents whose children rely on them to drive to schools, clubs etc.; Employees / Employers trying to get to work; Consumers that play a vital role in the local economy; Over 65’s with family and community roles that continue long into retirement; Children whose unlimited potential is being stifled.

What is most abhorrent is that the value of people, with disabilities (and their families), has been completely dismissed. In a time when the government is aggressively pursuing measures to bolster domestic activity, people with disabilities are isolated. Continuous cuts in supports and services render full participation in society and the economic recovery, further and further from possible. Not only is this counterproductive, it is simply cruel!

Direct Payments – Insidious Erosions

Today, I will be attending a “Solidarity Event” hosted by the Network of Centres for Independent Living.  This event aims to bring together representatives from Centres for Independent Living from around the country with TDs and the media, to publicly lobby to protect services for people with disabilities and prevent massively unfair cuts coming at us from a number of directions.

Now, we need this network, and we need events like this, but I’m not in full accord with the agenda. Top of the agenda is a call for our “leaders” (elected representatives) to commit to bringing in Direct Payments as part of a Personal Assistance Act.  There is no doubt that a Personal Assistance Act is long overdue in Ireland to enshrine in law the human rights of people with disabilities that Ireland have signed up to in a number of UN documents.  Since 1994, these documents have stated that access to a Personal Assistance Service is a RIGHT (not a privilege or a luxury) for people with disabilities, and that such a service be provided on the basis of the needs of the person with disabilities, NOT according to the miniscule budget allocated on a year-to-year basis by the HSE.

My main point of contention with this as the top item on our agenda today is the emphasis and priority given to Direct Payments.  “Direct Payments” sounds great, doesn’t it?  I heard it described by one disability activist as a “no-brainer”.  However, it has a specific meaning when it has those capital letters, as well as a specific history.  And in the context of the rights of people with disabilities in Ireland and the services currently available to us, it also has certain implications.

First to its meaning.  Direct Payments (with its fancy capital letters) refers to a scheme whereby a person with disabilities would have their needs for a Personal Assistance Service assessed, and would then have a lump of money given to them so they can employ and pay a Personal Assistant privately.  Currently, we have to go through a service provision agency, be that the Irish Wheelchair Association or a Centre for Independent Living, who administer the service according to the budget allocated to each individual service user by the HSE.  Of course, if you are miraculously rolling in cash, you can buy the service from a private company.  So Direct Payments would mean cutting out the “middle man” of the service provision agency.  And this is doubtless ideal for some people.

The history of Direct Payments is an interesting one, given the current climate in Ireland.  They were innovated in Europe by the Swedish, who have been trailblazers in the Independent Living Movement, and whose social democracy has put most other EU countries to shame in terms of creating a fairer and more equal society with an enviable standard of living.  Sweden had already established a Personal Assistance Service before anyone thought of Direct Payments.  So how did the idea even arise?  Simple: Recession.  When the country hit a rough economic patch in the 80s, services for people with disabilities were suddenly under threat.  Direct Payments were thought up as a way of selling PA services to the government, while making it look like an overall saving for the exchequer.  It looks like a saving because suddenly everything gets measured in “unit costs”, the government is saved all that fiddly administration such as drawing up contracts, organising accredited PA training and filing all those employer tax returns.

So in the context of Ireland right now, this makes the rosy glow with which a government department might view Direct Payments seem more like a sinister fog.  All the talk in the HSE now is about “unit costs” – a way of seeing each individual with disabilities as just that – individuated, without context, without community.  It turns the notion of a social economy inside-out. 

It is fair to say that Direct Payments would be, at least in the short term, a pilot project, offered to those who want it.  But given the way disability organisations seem to be screaming for it and heralding it as the ultimate realisation of our human rights makes me feel that it could become the expected norm.  In that scenario, anyone who didn’t want Direct Payments would once again be “a burden”, an awkward stick-in-the-mud who wants everything handed to them on a plate.

Here’s how I would feel if I was offered Direct Payments today (or even next year):

·              I have better things to be doing with my time than to become an employer and administrater to the people who are supposed to make my life easier

·              My PAs would be people who showed up to my house every day, rather than part of a network of PAs and Leaders sharing the ideals of Independent Living.  Who do I talk to if I have issues with a PA?

·              Currently, the HSE grants me 15 PA hours per week, and the PAs get paid approximately 14 euros per hour.  The vast majority of Leaders would say they could do with more PA hours than they currently have.  But if I were given the cash to pay my PAs 14 euros an hour for 15 hours a week, then the government would be giving 790 more euros per annum for their pay than the government deems it sufficient for me to live on.  That just feels like a kick in the teeth.  What about all the hard work I do to keep myself alive and be active in my community?  Is that worth less? Or should I stop trying so hard to be a complete human being?

·              If the government gave me that 10 grand a year in a big brown envelope, I’d rather spend it on buying and maintaining the power wheelchair I need (which the government refused to give me any money for); I’d spend it on the ludicrously expensive bits of assistive technology I need, like 5000 euros for a 40-cell Braille display; I’d spend it on a nice big double bed with the mattress and position adjustments I need rather than accepting the government’s offer of a hideous, narrow, uncomfortable, un-sexy hospital bed which is actually more expensive, but the hospital ordered too many so they just want to get rid of them.

 

And that’s not even touching on the massive issues of transport and housing that all people with disabilities face every day of their lives. 

But who am I to swim against this particular tide?  Prominent voices in the disability community adore Direct Payments, and governments like it because it sounds “empowering” (in a capitalist kind of way), and adds up neatly in the books which have no column for a social cost / social benefit analysis.  And given the current blasted Irish landscape, it may well come down to accepting that or accepting a return to the bad old days of dank institutions and blind beggars grazing their donkeys on the long acre.