I was invited to speak at The House of Commons as a result of my previous work raising awareness of Usher Syndrome the condition that first took away my hearing followed by my sight.
I should say that whilst I am not a big fan of Usher Syndrome I have learnt it’s best to work with it rather than fight it or hide away from it.
Once I took charge I am in charge of what I can and cannot do.
Usher is just a part of me and does not define the person I have become, first and foremost I am Molly.
That said I am the first to stand up not just for myself but for others with the condition, something I am always proud to do.
I was surprised but incredibly proud to be asked to speak about the challenges of life with living with Usher Syndrome by ParliAble in the House of Commons.
I had never taken an active interest in the goings on in Parliament but like everything was happy to learn.
On arriving at the Palace of Westminster I realised what an honour it was to be allowed to park in the grounds, we were, naturally searched as was the car before we could obtain our visitor passes.
I found this part quite stressful as the hustle and bustle of policemen and women, security guards and visitors was quite intense, thankfully Uni was as calm but alert as always and on receiving our passes and along with our guide helped me safely find the way to the room in which I was to present.
I was delighted to get to the room well ahead of time, I was able to scan the room, to admire the decor and to get my bearings.
It was in the main green with leather bound seats and dark wooden panelling, patterned carpets which I couldn’t look at as they made me feel quite dizzy another of the delights of Usher Syndrome.
From the ornate windows I could see the River Thames, my parents pointed out the boats and whilst it was a beautiful bright summers day, a brief scan around was all my damaged eyes could take before I had to look away and replace my dark glasses to protect my eyes from any further torment and strain and to avoid the dreaded headaches they so often cause me.
I was excited to speak in such an affluent place, I was just amazed people here would be interested in hearing what I had to say, but they were!
It turned out the room we were in was not the room in which I’d speak in, it was the one a couple of doors up but identical.
The lighting was ok for me, not too bright and not too dark and although an old building it had warm furnishings so acoustically worked for me with my hearing aids in.
My presentation was about the daily challenges and struggles of people like myself, the lack of understanding of people with sensory impairment and the desire to succeed and to be valued members of society.
I spoke for about fifteen minutes and while I spoke I could not see the people I was speaking to as my level of sight loss is to the degree that on a good day I tend to just see a part of a persons face, perhaps an eye and nose but usually I’d set my sight on a nose and mouth to try to lipread whilst using my residual hearing to assist me to access the hearing world.
My world might be tiny to see but my determination spans the world.
I was pleasantly surprised to get a round of applause and lots of questions. The questions were relayed to me so I could answer, without assistance I cannot respond to people unless they are very close to me.
I always believe the more questions the more I am raising awareness.
There are at this time no deafblind people working in Parliament but several deaf and several blind. There is, however, no reason a deafblind person couldn’t work there, this was confirmed to me during “My Question Time”.
I was asked if I was offered a job could I get to and from work, of course I would engage Guidedogs for the Blind to run the route with Unis several times, right up to the room I would work in and I could them completely rely on her to get me to and from work very safely.
My biggest pet hate is the assumption that deafblind always means no hearing, no sight and no speech when with the amazing technology available lots of us can access all sorts of information and our communication can differ but with the right support we can all be successful, support really is key.
We discussed accessibility, modification, technology and mobility in detail along with “reasonable adjustments” all well received and I’m told lots of notes were taken which is very pleasing.
Presenting in The House of Commons was one of my proudest moments and knowing I’m the youngest ever makes me feel very special and privileged and I have been asked if I would return which is a big fat yes.
I have since been back for a tactile tour of Parliament which I would absolutely recommend and will remain in touch with the team at ParliAble in the hope we can continue to raise awareness of Usher Syndrome and perhaps in time get somebody with Usher into work there because “Why not?”
I’d like to thank all those involved in my being invited to do this presentation, to my parents for their support and Unis for being Unis and keeping me safe……
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