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Our aim is to raise awareness of the  condition and its many challenges

Our aim is to raise awareness of the
condition and its many challenges

Funding mainstream assistive technology

Funding mainstream
assistive technology

To bring together those living with  the condition, to share experiences

To bring together those living with
the condition, to share experiences

To ease isolation

To ease isolation

To recognise and raise awareness of enabling assistive technologies

To recognise and raise awareness
of enabling assistive technologies

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Molly Watt Trust

Tuesday, 14 March 2017 14:59

The love of Unis

Unis came into my life when I was 16 years old.  Looking back I know I did not thoroughly embrace her, I also acknowledge the constant bullying and questioning of my needs had a huge part to do with the way I felt.

Having been born severely deaf and coping well with hearing aids and my daily support, having a service dog of any kind had never entered my mind, why would it?

However, at 12 I was diagnosed with Usher Syndrome meaning I was going from deaf to deafblind and along with that diagnosis came a whole multitude of change.

Unis was a huge part of that change.

I loved her the moment I met her but it took me along time to get my head around having her.

The fact that deafblindness is a hidden condition meant I had been able to hide my condition if I chose to and back then I chose to more often than not, after all I just wanted to appear to be like everybody else!

As beautiful as Unis was and is she made me stick out when it was the very last thing I really wanted.

Behind closed doors she was my everything, she understood me more than anybody, she was always there for me, she never doubted me accept on the occasions I refused to take her out with me - stupidly, back then I would rather fall over and hurt myself than be seen safe and sound with my guidedog.

I look back now and can see my being able to accept myself had been made harder by the thoughtless people around me in school.  They made my life miserable by offering no encouragement or reassurances that I was ok, that I was doing the right thing in having and using Unis as my sight diminished, in actual fact they went out of their way to suggest I did not need Unis and that I should return her.   Without a doubt these were the attitudes that made my life all the more challenging.

That was a time in my life I look back on rarely accept to say this disgraceful treatment of vulnerable children should never ever take place and if in my work I can make that never happen again my suffering was not for nothing.

Unis saw me through those hideous times, she knew how distressing I was finding life, she would sit at my side leaning on me so I knew she was close.  In my time of denial and feelings of depression and isolation she has been with me.

On days when I feel anxious she has been there to calm me down.  Snuggling up to her and stroking her beautiful silky fur has been assuring and also enabling.

Caring for Unis was initially overwhelming but doing so strengthened our bond.

I am never alone with Unis, she understands me better than anybody.  Unis knows when I am at my most anxious, she has been calming and encouraging and has made me go that extra mile on many occasions.

Unis has been more than my eyes over the 6 years I have had her, she has been my best friend, even my therapy, she has kept me sane through the most difficult times.

Sadly Unis has found working with me difficult over the last year and we have together reached the heartbreaking decision that she should retire and enjoy her retirement rather than struggle on looking after me now she has developed anxieties of her own.

Naturally I am devastated and hope my family can keep her as a pet when my new match is found.

Unis will always be special to me, we have been through so much together including some of the most unpleasant experiences in my life and for that I cannot thank her enough.

Even though she cannot deal with the pressures life as a guide dog brings she is still always here for me, she helps keep me calm and focussed on the days I don't feel I want to leave the house.  She knows I care more for her than anything and that I need to give her the same consideration and that means having to go out when I really don’t want to and strange as it might sound once I get out I always feel so much better.

Without Unis on those bad days I might have no need to leave the house and my mental health would absolutely suffer.

Before https://therapypet.org I would not call myself a ‘dog person’ in actual fact as a little girl I was quite afraid of dogs.  My parents bought a dog to try and help me over my fear, I accepted the dog but had little to do with her, however, when she died I was devastated and when the next family pet dog was brought home, the most gorgeous and fun boxer dog called Dexter I grew to love him, he grew to be big and bouncy but also incredibly affectionate and protective of us all.  Without Dexter I would never have opted for a guide dog and in effect missed out on all the positives they bring, not just in guiding me but in everything she has given me over the years.

 

I was matched with Unis when I was 16 and over the past 4 years have been subjected to terrible discrimination simply because people either do not follow the law or have no respect for it or people like myself.

Denying guide dog owners access to the majority of places is illegal yet it goes on all the time, sadly there is little support for people like me who often feel very alone and unprotected by a society that often appears not to care.

Only the other day a taxi was ordered and on mentioning I had Unis with me all of a sudden the company had no availability!  This is nothing rare, I've ordered a taxi before now and not mentioned Unis and been refused entry, no reason just NO!

Almost a year ago I was staying with my grandfather in Wallasey. 

On the evening of 27 July 2014 we decided to go for an early evening Indian meal.

I have been to Wallasey lots of times, having family live there and it is coincidently the place where the whole Guidedog movement began in October 1931, something the people of The Wirral are very proud of and rightly so.

However, seems not everybody in the area is as accepting or understanding of the laws with regard to accessibility for Guidedog owners and their Guidedogs!

We arrived at the Tandoori Mahal on King Street, Wallasey, apparently the oldest Indian restaurant in the area, just after 6pm (opening time) my grandfather told me the restaurant was empty.

On entering the restaurant we were told Unis was not permitted on the premises.  My grandad and I told the two men at the restaurant it is illegal to deny Unis and I to which they replied that they knew it to be illegal but that their boss didn't like dogs as they "scared away the customers!" strange as the restaurant was empty. 

It was very clear Unis and I were not welcome.

My grandad pursued things as I left the premises in tears, not only did I feel humiliated I was made to feel like I and my needs were unimportant.

As my grandad turned to leave having had his say to the two men another man appeared at the door, he was, apparently, the owner and told my grandfather that No dogs, Guidedogs included would be allowed in his restaurant!

All three men knew the law and all three men willing to illegally deny access.

I was distraught but so was my grandfather who was almost in disbelief at the complete and utter disrespect of myself, Unis and the law, that upset me even more.        

We went to another restaurant that evening and the following day contacted my mother who decided enough is enough and contacted Guidedogs for the Blind in Liverpool, they offered to call on the restaurant to "educate" and also contacted RNIB legal team to discuss the possible way forward - I was and still am very angry to be advised not to contact the media as it is my belief that bad publicity costs money and this would work in the favour of Guidedog owners and make others think twice about denying access.

To cut a long story short I was left by Guidedogs for the Blind to deal with RNIB's legal team who advised of the options.

I decided, with the financial help of my parents that I would pursue the matter and even after the restaurant was served with the relevant documents they had no answers for their unlawful behaviour and I therefore obtained Judgement against them, they ignored the Court documents and on 21 April 2015 a Warrant was issued to be followed up by the local bailiff.

The debt remains outstanding even though the restaurant remains open and the owners still in the local area!

This is nothing out of the ordinary, it happens all the time.  I do not feel protected by the law - I personally think trial by media works better than the law which really is alarming.

I'd still like the Wallasey media to get onto this because at this exact moment in time I have been wronged, it's been proved in law and yet I am still the loser - how can that ever be right?

Things really do need to change!

Friday, 24 October 2014 01:00

Hi "I am Claire"

Hi I'm Claire Cooper and I have Usher Syndrome type 2, I've been partially deaf since birth with 2 digital hearing aids but never considered myself deaf as I've always been oral and never needed BSL. I had help where needed throughout school and college. 
 
When I left college I began a career in the hospitality industry working in bars and clubs I was living a normal teenage life. But then when I hit 20 I began to notice the spotlights at work were becoming an issue among many other things like bumping into lampposts and falling off curbs etc, and soon became known as "Clumsy Claire".
 
At 21 I got married and only a month later we got the answer as to why I had been so clumsy.... Usher Syndrome
 
Well that took the wind out of my sails and really knocked our honeymoon period into a downward spiral, I couldn't see the light So became depressed and questioned my marriage as I didn't want my husband to become a carer, it felt like I had been given this life sentence and wondered what I'd done so wrong to deserve this. I learnt the prognoses and thought my life was over. 
 
My husband was amazing he said he would stick by me no matter what, that he would always be there.
My parents and family took it hard with self blame as its a genetic condition but they too said they would support me through everything I did. 
 
I also found Molly and Jane Watt before MWT was born.  They were the first people I discovered with a link to Usher, when I discovered my diagnoses I'd never heard of it and felt alone so to find these amazing people really showed me the light, even though Molly is younger than me she was so positive and was achieving so much, her mum is such a fighter too helping so many with Usher Syndrome overcome obstacles if something isn't right then Jane is there without question. 
These people are amazing and have helped me through so much they don't even realise, without them I don't think I'd be where I am today.
 
Which is a Mother to a Beautiful 3 year old girl, we decided to move our life plans forward so I could see my child grow up while I still have sight. I'm also a Guide Dog owner, my dog Minnie has been another little life changer and has firmly put our lives back on track. 
I also enrolled myself into Open University to start studying again which without Jane and Molly's help I don't think I would have ever considered again. 
 
Usher Syndrome may have been the worse news I've ever had to hear and also the biggest life changer but it's made me who I am today thanks to the amazing people around me I've become a fighter and a person who has Usher and proud!

 

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