Well it’s the year of 2020 everyone!
It certainly has been a time of reflection for me, as a result I wanted to share my last decade in a blog that might provide hope for those living with progressive conditions such as mine. As hard as it can feel there is a future, it will be challenging but hard work and determination can see you through.
I have always hated New Years, I’m that emotional sobber in the corner as midnight strikes!
For me the concept of time is quite terrifying, to be frank I have always tried hard to not look too far forward nor back! However it’s this time of year where you’re forced to think about these things.
And then there’s the people talking about the past DECADE as we walk into the next.. well my mind has been having an inevitable real field day thinking about all those years...
10 years ago, I was 15, had been registered blind a year and it was not long before I was put on the waiting list for a Guidedog. I was at boarding school, where I was tormented for being different - I couldn’t sign British Sign Language, so therefore I was “a sad excuse of a deaf person,” I didn’t look blind so therefore I was “pretending,” I had both pupils and teachers grind me further into the ground daily. All I wanted was to be like everyone else, to have no worries besides my GCSEs - not the worry of not being able to actually see enough to read them let alone sit the exams and pass.
At 15 I was put on extremely strong medication to try and rectify a secondary eye condition (Cystoid Macular Oedema,) in the past decade I was on these twice for between 6-8 months. Both times I went from an average size 8/10 to a size 4/6. My mental distress was at the brink and I’d spend most nights crying in pain. The medication never worked. I even had injections and eye drops to try and save my failing central vision - none of which worked. All this while I was at a school who to be quite honest, didn’t want me there.
I had 5 degrees vision left. (Thankfully it’s been stable since.)
Fast forward a few years, I lost friends I gained friends I found the college who restored my faith in humanity... I found *Molly* again. I have Strode college in Egham Surrey to thank for that. I’ll always be eternally grateful for the teachers, the support and of course the life long friends I made there.
Leaving college I proved the little doubtful molly I had inside me that I WAS worthy of succeeding, I even got into university. Sadly university wasn’t to be even after my tireless battle with the authorities to gain the support I absolutely deserved.
At 20 I got a job at Apple where I worked as a specialist and these guys, I’ll always thank for seeing my true value. I found my niche - technology! The ever impactful tech that had gotten me that far and I hadn’t actively realised it until then.
My confidence built up and I built a field of contacts, I bought my first applewatch and wrote a blog that went viral and literally changed my life.
After the applewatch blog I made contact with GN Hearing who's smart hearing aid technology would go on to enhance my life. GN produced the first hearing aids completely compatible with applewatch and iphone meaning I had the a pretty enabling awesome accessibility toolkit. My confidence was high and as a reult I left apple to persue a self employed journey in accessibility, web and app design and usability.
My first dear Guidedog Unis who had come into my life when I was 16 years old was forced to retire early, saying goodbye was to date one of the hardest things I’ve had to do. Thankfully her forever home is with a good family friend and she is now loving a happy retirement.
My second guidedog the beuatiful little Bella aka Welly trotted into my life and has been instrumental in my life since. Thanks to that poppet, I can earn a living and do so safely and with genuine happiness having my little best friend by my side at all times.
I have been able to work with massive companies like Apple (HQ,) LinkedIn, NHS Digital, Spotify, ASOS - the list goes on.
I started working with the amazing guys at Sigma - they too, have been amazing in contributing to my growth in independence, knowledge and confidence.
I have travelled the world, travelled europe delivering keynote presentations and meeting amazing people. Making memories ?
And here I am, I am the person I’ve grown into today and well, I'm pretty proud of myself.
Though things as always remain challenging, the past couple of years have been steady upward progress for me.
In 2019 I proved to myself that I could get even *better,* and with my Molly Watt Talks journey have done incredibly well - if I may say so myself! Also as a person, I’ve grown so so much.
I won’t finish saying it’s all been perfect - it’s been awfully hard at times, I still battle with my mental health and spend some days in bed crying at the thought of leaving my house.
That’s life though, and never be afraid to sit a day out here and there - it’s not easy being human, learn to give yourself a break and to not feel bad. One thing I learned just in the past year.
My wish list for this next year/decade is to grow, to advocate for others, to travel, to work and meet more awsome people, buy my own home and to see others living with my Usher Syndrome thrive.
So before I sign off I want to thank YOU all for still being here - I see you! Not literally obviously, I am blind (heh) you’re so very appreciated.
May we all continue to grow, and learn. Here’s to the next 10 years...
Do you have a year plan, a ten year plan or a wish list? If you do please consider sharing, write us a blog we can share and lets make these things happen.
I always wanted to work, I'd never considered that getting something part time around my studies would be an issue because "I know my own capabilities" clearly few others understood or wanted to understand, at least that's how it felt.
Both my brothers had part time jobs in local supermarkets whilst doing their A levels, both are sighted and hearing and neither had a problem getting employment.
Neither particularly liked the job but it was pocket money and as my Dad always says "Good grounding" working with the public.
They were both employed to work at the checkout which meant sitting at an electronic till that scanned and did all the adding up, totalling and even told them how much change to give to the customer.
I know fully well I could have carried out that job with only minor modifications and a little consideration for myself and my guide dog but I was never given the chance.
I applied for job after job to be told, I'm sorry not hiring or my application just completely ignored. I began to feel despondent and very negative about myself.
My friends all had part time jobs and as a result they also worked during the school holidays and made new friends, once again my condition, although invisible isolated me from people, things and experiences.
The feeling of rejection as a teenager was very painful and although I wanted to just give up something inside told me not to.
Then just after my 18th Birthday the local pub had a new landlord and was looking for bar staff and after an interview of sorts he, knowing my condition decided to give me a chance, I was so excited and absolutely loved that job.
Fully aware of my disability and my guide dog the landlord was very accepting. There were a few broken glasses and calamities but, I think on the whole all went ok until two things happened!
The first one was that winter came and the dark nights, the lighting in the pub became incredibly difficult but I enjoyed being in the pub, meeting people, being part of a team, it felt good to be out there doing it.
Then I went on holiday with my family and when I came back my job had gone!
Sorry no hours for you Molly, followed by no replies to my texts and that was that.
I was devastated and to this day do not know why I was ignored and rejected in this way. It was painful and crushed my confidence and totally unprofessional an attitude.
It took me quite some time to get my confidence back and to start looking for part time work again but in the meantime I worked for my Dad when I could and always happy to carry our charity work to keep busy.
Then I was fortunate enough to learn of a job with a well known local retailer and to get an interview, I was delighted but so nervous as I knew my disability had to be explained and I also knew how few people understand Usher Syndrome.
The common misconception that deafblind always means hear nothing and see nothing and the shock that I can speak too! I can also communicate with BSL and tactile signing but neither are my chosen method of communication, however, I learnt it to communicate with those who sign as a first language.
A long chat with my parents and friends made me feel better and up for the challenge.
I was very nervous on interview day and it didn't help that I arrived slightly late and the hotel receptionist didn't have a clue where the interviews were being held but after some discussion with a colleague directed me by saying and pointing "You go up there and round the corner and its a room down there" - I'm blind, I couldn't see where she was pointing and where is "there" anyway?
After asking for better instruction I got where I needed to be and in I went.
It was a group interview and I could sense people looking at me.
Thankfully they were a friendly bunch and I was made to feel at ease.
The interview certainly made me think a lot, not just about my responses but to the responses of the others at the interview.
I found myself feeling quite confident and able to be myself.
At the end of the interview I was quite sensitively asked about my disability and I have to honest I'd rather be asked and give an honest answer to any question than for others to assume.
I wasn't sure how the interview went but I decided positive or negative result this was a good experience for me as if nothing else I had made each of the people at the interview aware of Usher Syndrome and that has to be a good thing.
Being invited for a second interview was great for my confidence but this time I was nervous not just because I really wanted the job but that my guide dog and I had to negotiate London in the rush hour which is quite a challenge in itself.
I won't go into great detail about the interview except to say as nervous as I felt I was able to be myself and to explain myself, however I was very anxious about my journey home!
As a result I did leave the interview without staying to ask questions which I wasn't happy about, however, I did take the time to email my questions and explain my reason for not staying behind at the end.
I was offered the part time position, both myself and my guide dog feel very welcomed and accepted and I thoroughly enjoy the job.
I feel a valued member of staff, I just wish all companies were as open minded as this one.
Sadly there is too much ignorance of disability in the workplace and it needs to change.
Awareness and understanding is all it takes and we can do the rest.....
I work at a job I absolutely love and adore.
I love all of my co-workers, I love the people, I love the ‘perks’ and just what I do in general. I have been at this organization for 7 years and have had 3 bosses and 1 “filler boss” (maternity cover) while one was away on Maternity Leave and many co-workers have come and gone, (It’s not a bad place to work, but when you’re in a small town, it’s hard to find good employees at a non-profit.)
A few years ago we had a “Filler Boss” who came in to fill a Maternity Leave position for a year.
As a ‘disabled’ person I always get kind of nervous meeting a new boss, or starting at a new place – because honestly – you don’t know how people are going to react or respond to you once they find out that you have Usher Syndrome. I didn’t think it would be this bad though.
Never in my life have I ever been treated so bad and lowly as I was during the 9 months he was there. And I have a big sister.
After the first introductions to the staff my pregnant boss explained that I had a hearing loss and talking with my back to you just did not work. More or less giving a respectful heads up.
Immediately after she left it was apparent he did not pay attention or care about her advice. He would constantly walk up behind me and then start talking – getting upset when I wouldn’t respond or would walk away. He also would startle me. Even though it had been explained to him I had Usher Syndrome and what that was, he still would walk up in my blind spots and startle me and act like it was a huge shock when I would tell him not to.
It was incredibly frustrating and embarrassing. But I figured he was just a moron and just didn’t get it. Because let’s face it, there are ignorant people out there, and no matter what you say or do, they just don’t get it. But it just got worse.
Every other year the company attends a job fair of sorts and volunteers were needed. I needed the extra hours and cash so I volunteered to go. Never having gone before I was unsure of the dress code. Casual? Business? Business casual?
So I asked.
I was told to cover up my cleavage. That was it.
I’ve grown up a busty girl, no matter what I wore I have cleavage. And trust me, I didn’t show it off. I was so self-conscious and embarrassed about being big breasted that I would do anything I could to cover up. So obviously this comment upset me, and was really not warranted. Not only was he a male saying this to me, he was a male boss, but this was also spoken on the main floor of the organization and was overheard by many people including other staff who were equally as shocked.
After thinking about it, reading policy, laws and encouragement from family, I filed a complaint.
His response word for word handwritten on a letterhead was “I am sorry I hurt your feelings.”
Whatever. He’s a dick. So I figured that was it.
Then he began to ask me into his office with the lights off. He would have one of my co-workers come get me, and I would go to his office and he would be sitting in there with just the computer screen on. The first time I refused to enter he acted like he was confused. I had explained my Usher Syndrome plenty of times before this and explained the whole night vision thing. So once again, I told him I didn’t have night vision and that I wouldn’t be able to find my way to the desk safely. But not only that, it was inappropriate for him to ask female employees into a dark office. He told me to turn on the light. I responded by saying if I can’t see your desk, how am I going to find a light switch? Get up and do it yourself.
I’d love to say that from then on out, he would have the light on. But no, every time I was “summoned” the light was off.
Eventually he took away all of my job duties, so I was only able to do the bare basics. There were programs I had created and implemented with a very high success rate (they were one of the highest attended programs at the time.) But because he didn’t feel I was capable he passed it on to another employee. He also explained that technically doing these programs was not listed in my job description, so I wasn’t allowed to do half of the duties I was currently doing.
The he got my co-workers involved, and they were told to report to him every time I did something wrong, made a comment…anything really. If I rubbed someone the wrong way, they were to report it to him. I still don’t know what the point of this was. I don’t know if he was keeping a file or what. Eventually I began to record all the work I was doing, keeping track of times I was doing certain things, and wrote down every single conversation I ever had with him. I had to. I didn’t know if anything I said or did was going to be used against me in some way, shape or form.
I began to feel sick about going to work, and hated going. My fiancé had to pick me up from work one day because I had an anxiety attack. I was seeing spots, couldn’t breathe and shaking like a leaf. Once I was out of the parking lot of, it stopped. My family eventually made me go to my family doctor. I’ll admit, I was hoping he would put me on stress leave and I wouldn’t have to deal with this anymore. But he thankfully didn’t. He gave me a series of tests, all of which came back showing that I was depressed and had sever anxiety. He wanted to medicate me, but I don’t like taking pills. So he suggested I go to counselling. The lady I had was amazing and gave me some very useful suggestions. But I think even just having someone who wasn’t family to talk to really helped. She and my doctor would periodically remind me that I could take pills to help with everything, but I felt that if I did that, it would be letting him win.
After some urging from my fiancé and family I filed another complaint, and this time I submitted to the board as well. I included my job description, all my programs (the one’s I created as well as other regular programs.) along with the stats from each program, all my employee reviews, all emails between the jerk-off and myself and whatever I could think of. I mailed a copy to the head of the house of the board chair, so I knew he would get it and gave a copy to the acting boss.
What is Multi Sensory Impairment?
"Persons are regarded as deafblind if they have a severe degree of combined visual and auditory impairment resulting in problems of communication, information and mobility".
One severe impairment e.g. severe hearing loss, accompanied by partial sight or moderate sight loss still constitutes deafblindness. The reason the later or secondary loss only requires to be moderate before compounding effects are felt, is that the second sense has been relied on to compensate for the first loss. Normally a profoundly deaf sign language user who becomes partially sighted will have inherent problems with communication, access to information and mobility. In a similar manner, a hard-of-hearing person who has always lipread, when vision deteriorates at all will have problems. Equally a blind person who has relied upon sharp hearing will have real problems if hearing substantially deteriorates.
So how should somebody of school age with this condition be supported?
A teacher of the deaf or teacher of the visually impaired is not enough, there must be a multi sensory impairment specialist involved.
In our area we found support for deaf children outstanding. At the beginning it was very full on, literally bombarded with information, weekly visits from a teacher of the deaf, meeting with speech therapist, groups to attend to meet other parents and deaf children, audiology appointments regularly, details about claiming Disability Living Allowance, details about our local Deaf Children's Society and the Charity DELTA (Deaf Education through Listening and Talking) who's ethos I absolutely recommend and details about SEN (Special Educational Need) and Statementing.
It was daunting but looking back how lucky we were to have so much support and input from the Hearing Impairment Team and particularly the Teacher of the Deaf (TOD) and great input from the Speech Therapist.
We also had consistency and accept for two or three visits Molly had the same TOD from pre-school through to almost 14 years old.
Lots of hard work went into supporting Molly on her journey as a deaf youngster and the results are clear.
Molly caught up with her peers, her speech developed beautifully and she often describes her happiest times where at nursery and primary school.
Then came the "Usher Diagnosis" at senior school.
Confusion best describes the next chapter:
Deafblind, no qualified teacher to work with the deafblind but there are Visual Impairment Specialist (VIS) teachers, Molly will have a senior one!
All well and good but a TOD and a VIS do not add up to a Multi Sensory Impairment (MSI) Specialist.
There was the honesty that neither the Deaf nor VI teams were familiar or experienced in supporting somebody with Usher Syndrome - somebody needed to be trained' it would take 3 years for somebody to be qualified!
In the meantime MSI support had to be bought in from Sense to support not just Molly but the team around her and that was to include teachers and teaching assistants at the school as well as advise the TOD and VIS.
The one thing that became ever obvious was the sheer exhaustion deafblindness brings along with mobility issues and acceptance.
Acceptance made ever harder by the ignorance surrounding the condition.
For us there was a grieving period, which was very painful, particularly when there is continuous questioning "You're not blind" "You're not deaf" even by those who should know better.
The cruelty of an invisible disability makes acceptance all the harder, the continuous questioning often leads to a very unhealthy and unacceptable denial which again has its problems.
The desire to just "fit in" never goes away and then the need for acceptance from all.
Acceptance and understanding in education, acceptance and understanding in the work place and acceptace in general is required and it really isn't a big deal to know the basics.
I cannot and nor would I want to speak for the entire Usher Community but where my own daughter is concerned she wants to get on with her life, to achieve what she can and more important than anything she wants and deserves to be happy.
In order for her to have those few things all she needs is to be accepted as the person she is and to be understood and what is more she is the expert on herself!
At this stage direct support can be achieved by simply asking!
In the workplace potential employers should be aware of the diversity and unique skill set people with usher syndrome can have, how much value they can bring to any workforce.
Like us all they just want that chance.
I think they call it "Thinking outside of the box".