Hardest Hit speech given in Manchester on 22nd Oct 2011

The Hardest Hit campaign is a petition and protest to the Government to protect the benefits of disabled people across the UK.

The campaign has the following key messages:

  1. Disabled people, those with long-term conditions and their families are being hit hard by cuts to the benefits and services they need to live their lives.
  2. Many are living in fear of cuts to essential benefits including Disability Living Allowance (DLA) and Employment and Support Allowance (ESA). The total cuts will mean an estimated £9 billion* loss to disabled people and their families’ incomes over the next four years, on top of cuts to many local care and support services.
  3. The Hardest Hit campaign, organised jointly by the Disability Benefits Consortium and the UK Disabled People’s Council, brings together individuals and over 50 organisations to send a clear message to the Government: stop these cuts.
  4. You can support the campaign today by writing to your MP, signing up for a Hardest Hit event taking place near you on 22 October or joining our online protest.
  5. Find out more and register for an event near you at www.hardesthit.org.uk.  Join the conversation at www.facebook.com/thehardesthit or using #hardesthit on Twitter.

I was fortunate enough to be allowed to give a speech for myself and on behalf of deaf people. It’s not often enough that deaf people make their voices heard. Here is a transcript of the speech, it’s not word perfect, but it does the job.

************************************************************

My name is Suzie. I am totally deaf.  I don’t mean profoundly, I mean totally. And I have been like this since I was 5 years old from meningitis. I am lucky to be here – Meningitis can and does kill.  I have had a cochlear Implant, but it didn’t help me, it gave me noises my brain didn’t know how to handle and to be fair –  I can’t really remember being able to hear.  I don’t use anything now to “help me hear” I just lipread.  ALL the time.

I look very normal. But then I suppose I AM normal. I would feel very offended if I was told I am not. After all I have feelings, thoughts and issues with life the same as everyone else, deaf or normal, they are just labels we are given.  There are a LOT of people like me out there – you wouldn’t know it though.  There are 10 million deaf people in this country, some coping better than others.

Although I say I’m normal, ….I do feel very disabled. Disabled by the attitudes of society about my deafness and the stereotyping that comes with it.  People think I should sign, think they’re helping me by providing a loop system, think that because I am able to lipread I can understand what they are saying. 100%.  It doesn’t work like that.

Lipreading is very hard work, it takes an incredible amount of patience, intelligence, concentration and effort to try to work out what is being said.  Only 30 % of what you see is actually immediately understood, the rest is guesswork. I often get it wrong.  And I often get very tired from doing it all day every waking moment.

I therefore use my Disability living allowance to give me the freedom to pay for communication support.  It’s not cheap. I would be lucky to get even 3 hours worth of this support from the monthly allowance I get from the middle rate.  If I lost this, I would lose my freedom of choice and participation in society. There is no way I can follow a rally like this without communication support. Or a meeting, or be a volunteer, or to go to work, or to choose whether I go to Yoga or keep fit classes. Or even to go to church. I have to beg and ask all the time for this support, often being told “we can’t afford it” or “sorry we don’t do Lipspeakers or speech to text reporters”.  I can’t just decide on a whim I’m going to a networking event to promote my business – I have to plan it weeks in advance to get the support I need. You don’t know what you’re losing when you become deaf. What you hear with a hearing aid or a cochlear implant is not “normal hearing” it’s distorted. You will ALWAYS need to lipread or sign to get the full information when you become deaf.

I have an incredible amount of reliance on others to speak clearly or use communication tactics so I can understand them, you just do not know what it’s like unless you’ve been there.  I cannot do it without someone else making an effort too.

I also have reliance on Lettie, my hearing dog to tell me when the doorbell rings or the fire alarm goes or if someone wants me she will come and get me and take me to the person who is calling. The reliance on my quick wits and eyesight to tell me when there is danger, the reliance on others to tell me what I need to know if I haven’t seen something I should have.  My Disability Living allowance pays for Lettie’s upkeep and food.

I worry that if deaf people can read or write then under these proposed changes we are deemed “not needy enough to be allowed this Personal independence payment” It is going to make life even more difficult. Who wants to have to carry a pen and paper around with them all the time and have to keep apologising for misunderstanding through no fault of their own?. How can we be expected to think about how often we communicate and….. horrors of horrors – to describe how much help we need when communication happens all the time when you’re awake? Deafness is isolating, a barrier to full participation in society and costs money to live with.

I call upon the Government to ensure I, and the millions of other deaf people like me, do not lose our independence and freedom of communication as a result of these changes to Disability Living allowance.  And to recognise that access to communication is a daily function, freedom and right that EVERYONE is entitled to, no matter how much it costs.

Advertisements

About Suzie

Mother, Wife, Teacher, Cook and Hearing dog owner. Passionate about Equality for deaf and deafblind people. Believes in communication for all and breaking down these barriers, real and perceived. Deafened.
This entry was posted in Deaf awareness and tagged , , , , , , , , , . Bookmark the permalink.

4 Responses to Hardest Hit speech given in Manchester on 22nd Oct 2011

  1. Barnaby Lund says:

    Hi Suzie

    Great speech. I am profoundly deaf and lip read. I also use a hearing aid, but I agree it’s not perfect. I still struggle on the phone and in group conversations and get home from work exhausted at times. For the last two years I’ve been lucky enough to obtain funding for real-time speech to text translation for work meetings and a Captel telephone. These things have helped me keep my job, but if the funding were to dry up, I’m not sure how I’d cope.

    It’s good that we have people like yourself who are willing to stand up and be the voice for the deaf community. I may be in Australia, but you are still an inspiration to me. In country the government are talking about restrictions to benefits encourage more people with disablities to work and rolling out a National Disablity Insurance Scheme in the next seven years. People worry how these changes will affect them, and I truly hope the NDIS can support disabled workers and those who can’t work. So keep fighting the good fight!

    Cheers,

    Barney

  2. CJ says:

    Hi Suzie

    Well believe this or not, this isnt about me, but a person I know who lives close by, this is how nasty this goverment is and Atos.

    Friend Haemophliac, bleeds into joints daily has Factor VIII daily.few days a week hes in bed recovering.
    Given tainted blood,Bought by Government.
    He ends up with Hep A.B.C.
    He ends up with Cirrosis of liver.
    He having treatment daily injection for liver HOPE, as well as injecting factor VII.

    He send form E.S.A to ATOS…..

    Well Well Well hes put on work related ha ha.

    So not only do they punish him with tainted blood they think he can work as well as having treatment everyday, and with bleeds I dont even see this guy for months sometimes come out of house, furthest he goes, is into garden…….

    To me It proves that ATOS is all wrong entirely..I mean why should he appeal for something he didnt want that was given to him from this gvt, But he has to..

    I find this astonishing Indeed.

  3. You really make it appear really easy along with your presentation however I to find this matter to be really one thing which I believe I would by no means understand. It kind of feels too complex and very large for me. I’m looking forward on your next submit, I’ll try to get the cling of it!

  4. Suzie says:

    Reblogged this on deafcomm and commented:

    4 years on, and it’s still true.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s