Disability is never cured with one pill alone

So it seems I’m on the warpath. It also appears that if you want to change things, you have to work very hard to get it done. And hope your adversaries are willing to at least listen for one second to what you have to say.

Is it worth it? Not if your voice is cut off before the first vowel leaves your lips. It is worth it, however, if or when your input is evaluated and rationalized as such that your opponent understands quite clearly what you mean.

It’s true that we live in a society where politicians say all and citizens very little. The why and the wherefore of their actions often need to be repeatedly discussed on TV, in newspapers and in the salons of hairdressers, tea parties, and our own living rooms.

As an avid reader of online journals, I sometimes find myself ‘trying to stay in the game’ as it were. That’s when I realise that politics is a gigantic game of semantics. I try to learn from what I read and try to do my best to remember everything, something that’s not always easy to do. So I read more about it, and the following day more again.

Absolutely, my eyes could do without all that staring at online newspapers. My heart could definitely do without it. I’ve too many weak spots that catch my eyes. Human rights. Animal rights. Rights for nature and for those unable to defend themselves. Rights for the more fragile or most vulnerable in society so.

Like that, my soft spot for wanting to defend the rights of people with disabilities in Ireland went smoother still on Monday. I realised that a part of their (and my) monthly income is to be suspended from next week onwards. Billie in attack-the-ministerial-mailboxes-again mode so.

Online activism is something not everyone has time or energy for, so surely disabled people who don’t have internet access somewhere in far away Irish hills are wondering what will happen to that loss of finances next week. Do those who need to decide to have an answer to their needs? Will it be replaced by something awful, will they still be eligible? Will the government say ‘no, you’ve had more than enough already?’

Like you dear reader, I am at this moment still unaware of what will happen. When our government decided back in February that the mobility allowance was, in fact, illegal on age-discriminatory grounds, they said a new scheme would be in place before the old one runs out. We’re one week away from the end of the old mobility system, yet everyone is still in the dark about the promised new, more inclusive scheme.

That’s where my impatience if it is impatience, starts running out. I need the allowance to get me out of the house occasionally. The odd visit to the theatre, cinema and grocery shopping was funded since the mobility allowance provides money for cabs, etc. , but it also goes on paying house bills, food, and basic needs. Some people rely on the provision for similar things, and perhaps they also use it for medical bills. I only wished I had more massage sessions while it was still funded; we all know that disability is never cured with one pill alone.

Patience almost gone – the gift of the gab activated. Into Word, I climbed so on Monday to start formulating my concerns in regards to the lack of updates on a new scheme. Emails were sent left, right and centre as we say. Also, I was interviewed by a reporter for an Irish newspaper today that will run an article on the cancellation of the allowance following receipt of my letter. I hope that other papers will notice the story so we can create more waves in regards to it so. Of course, I will need to gather my facts after our government informs the media about it. Not sure when that will be, but for now I have a suspicious mind in an impatient body.

Further reading

My UNCRPD Posts for the MS Society

  1. Access to the United Nations Convention on the Rights of Persons with Disabilities
  2. United Nations International Day of Persons with Disabilities
  3. The General Election- One MSer’s Perspective
  4. Budget 2016 

Own blog

  1. UNCRPD – Getting Ready to Ratify (1)
  2. UNCRPD – Getting Ready to Ratify (2)
  3. UNCRPD – The Right on Participation in Political and Public Life
  4. Disability rights in Ireland
  5. Disability rights in Ireland, 3 years later
  6. The sorry state of neurology in Ireland
  7. The sorry state of neurology in Ireland, one year on
  8. Disable Inequality campaign
  9. Irish public transport: access all areas?
  10. Disability is never cured with one pill alone
  11. UNCRPD in Ireland – begging for change

©Willeke Van Eeckhoutte and Ireland, Multiple Sclerosis & Me, 2011-2013. Unauthorised use and/or duplication of this material without express and written permission from this blog’s author and/or owner is strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to Willeke Van Eeckhoutte and Ireland, Multiple Sclerosis & Me with appropriate and specific direction to the original content.

25 thoughts on “Disability is never cured with one pill alone

  1. I’m in the same situation as you so I know exactly how you feel. I’m not in a wheelchair but I need a PA to drive me places ad to come in with me sometimes. I have fibro among other things which makes it increasingly difficult to get out. I’m on so much meds just so I can get out of bed. My immediate family are all dead and I’ve lost several friends because I can’t go out and socialise much. However the mobility allowance has allowed me to be as independent as I can which is something very important to me. I live in the country so there is no transport apart from taxis and my PAs but I have to pay for petrol. Mostly I stay at home alone and with all the cuts every little thing that made me a person is slowly been stripped away. If I dont get the new mobility allowance (in money) i will be trapped in the house day after day alone and slowly going crazy from the pain of my Illness and the totally isolation. At the moment I go four days a week without talking to or seeing another human being. My illness had taken away my life and the things that were making it better by getting to my appointments, meeting friends for coffee or lunch, doing my shopping and just generally being out in the world will be gone once I lose this money. I dont think most people understand how crucial the mobility allowance is to a lot of people especially those without family or any means of getting out without it.

    I’m sorry you are in the same situation I know it’s really hard. Right now they don’t have another scheme sorted. AT one point they were talking about vouchers but that wouldn’t help me because I have to pay money to the PA who drives me and she brings me from one place to another. Like if I had to get my shopping and then go to the dr I@d have to get another taxi from the shop to the drs and then back. I’m scared for my future and I know other people are too. I just wish the government would start working for people who are disabled like they promised to before they were elected.

    I hope everything works out for both of us. I really admire you for speaking out

    1. I’m so sorry to hear about your situation, Maeve. We’re indeed in the same situation, but I don’t drive, otherwise I know exactly what you mean. It is hard going sometimes but we need to stay positive if possible. I hope your PA will continue to help you out.
      The last thing I know about the mobility allowance is from a letter I received on Thursday from James Reilly’s office which sounds almost the same as what Kathleen Lynch keeps saying:

      “the allowance will continue to be paid until a new scheme is in place. The Government decided in June last that new statutory provisions should be established to provide individual payments to people with severe disabilities who require additional income to address the costs of their mobility needs. An inter-departmental group, chaired by the Department of the Taoiseach, is working to develop detailed proposals for the operation of a new statutory scheme and is due to report back to Government in October.

      The Government also decided in June that payments should temporarily continue to be made by the Health Service Executive to those persons currently in receipt of the Mobility Allowance for a further number of months, pending the commencement of new statutory provisions, on the basis that this would prevent hardship, and, on an interim basis, alleviate stress, anxiety and uncertainty among a vulnerable group in society.

      The Government is very conscious of the needs of people with a disability who have relied on the Mobility Allowance and Motorised Transport Grant to support their independence and will take all of this into consideration when making a decision on future arrangements.”

      1. Thanks for replying Billie. You said we were in the same situation except you dont drive. I’m sorry if I wasn’t clear I dont drive or own a car either. I wouldn’t not be able to drive with the amount of meds I@m on and the way my illness effects me. The PA uses her car but I have to pay her a set amount to cover petrol so if I lose the mobility allowance I simply wont have the money to pay her and then I will not be able to go out at all. As I said I dont have family or friends that can help so I’m very worried like you are. I didn’t get that recent letter but thanks for posting it. You’re right it’s the same as Kathleen Lynch has said so basically we are still in the dark. I really hope that we both are able to get through this and they find a way to keep paying. It’s hard enough to deal with being sick without having to cope with being stuck inside 24/7. Please let me know if you hear anything else and I’ll do the same.

      2. Maeve, this is what I found just now about the mobility allowance: “Mobility Allowance payments continue to be made on a temporary basis by the Health Service Executive (HSE) to current recipients. These will continue to be made for a further period pending the commencement of new statutory provisions in the interests of preventing hardship.”

        We will get our allowance tomorrow so, unless they scrap it today, but it looks like we will at least have it tomorrow.

        Email me at billie@irelandms.com if you feel like it :)

    2. Maeve, the allowance will go on as is until a replacement scheme is in place. I talked to them this morning and they cannot see the amount of money each person receives, being lowered. Also, eligibility stays the same for now. We can all enjoy Christmas so with a more relaxed heart.

      Hope you’re well otherwise.


      1. hi Billie thanks so much for your reply. Can I ask who you talked to ? I hope you are keeping well too and you have a very happy Christmas

        1. Hi again Maeve,

          I first emailed Joan Burton of Labour to ask why I received a letter from the HSE asking for my financial statements, which I found a bit odd. The HSE asked about income changes which I obviously didn’t have since I am on an invalidity pension and I was seriously peed off not hearing any news about the allowance.

          A few days later I got a letter from the HSE saying that they looked into my financial statements but that they were waiting on the return of a signed confirmation that I had sent in the letter (stupid, right?).

          Three weeks went past and I didn’t hear anything back from the HSE, so I called them on Friday and I talked to someone called Jackie in the HSE. She told me that the allowance will continue to be paid until a new system is in place, but that it could take a while. Yesterday morning someone else in the HSE called me also and told me the same thing, and that there more than likely won’t be any changes in eligibility criteria or drop in allowance money. We can be sure so that at least they intend to keep it going somehow.

          Hope this helps, and in the meantime, please have a good Christmas and New Year. I hope you won’t be spending it alone…

          Take care,

    1. If you don’t try, you won’t know if you have succeeded… am a very patient girl when I need to be, but once it’s nearly up… time to take action. And keeping fingers crossed but talks are ongoing and things are moving forward… slowly of course :D

  2. I hope your “actions” will somehow help. I’d wish there was something us “small people” could do to make an impact and get our opinions out in the open to let the politicians, in particular, hear us!

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