Tag Archives: DisabilityQ&A

Disability Q&A #16 Glen Sheader

Hello and welcome back to my #DisabilityQ&A Campaign 🙂
today’s interview is brought to you by a very interesting man called Glenn, we met on Twitter and he was keen to be part of my series. I hope you will agree that his interview is interesting, eye-opening and shows that if you have the right support, and determination, you can do anything!

Tell me about yourself:

Hi, I’m Glen Sheader, 33, I live in Blackburn, but from Bolton. I am a assistive Technology Coordinator. My hobbies Include: Walking, trying new food, reading, social media, technology, TV, football, and generally keeping fit.

Now we know the basics, can we learn a bit more about you?

What is the medical reason you have a disability?
I am registered blind/severely sight impaired due to Lebers Hereditary Optic Neuropathy.
Have you had your Visual impairment / disability from birth?
No, I developed my eye condition early in 2006 when I was 22.

Which terminology do you prefer: Partially Sighted, Visually Impaired,

Sight Impaired, Severely Sight Impaired or Blind?
I usually refer to myself as being Visually Impaired.

Do you have a cane, Guide Dog or neither?
I use a long white cane.

If you could extinguish your disability, would you?
This is a difficult question, you would think that the obvious answer would be a straight forward Yes, however I would say that I would be a 70% Yes. When I lost my vision, it went in around 5 weeks, and took almost 2 years to accept, and I fear that if it came back instantly, it would also take some time to accept. There would be some hesitation, but my answer would be a yes. I know that I still miss having sight, there are many occasions when I day-dream about what life would be like being fully sighted again.

For those who do not know much about your VI what can you see?
My vision is severely blurred, if you imagine a thick fogg right up to your nose and trying to see through it, that is what it is like. So most of the time, I can see what is in front of me up to a certain point, but I cannot see any details. So, I can see a person, but I have no idea what they look like.

How has your disability effected you?

*Socially – to be very honest, when I developed my visual impairment at the age of 22, I slowly isolated myself. From my perception, there was an obvious social awkwardness. My people did not know how to react or what to say when around me, plus I did not know how, or did not want to explain my condition. Now later in life, I have a small circle of friends, but it is hard socialising when you cannot recognise people. If someone walks past me and says “hi”, most of the time I am not sure who that person is. So 11 years on from developing my eye condition, I would say it is still a challenge for me socially.

*physically – I have no problems physically. I often think that I am physically fitter than most, as I do not have the luxury of jumping in the car. I am on foot or public transport everywhere I go.

*Mentally – I am fine mentally, but I do have down moments. There are rare occasions when I find myself feeling low due to the stresses and strains of living a life with a disability. Those first couple of years of trying to accept my disability were extremely difficult. I shut myself away, I had problems sleeping, I drank too much and I struggled to see a future as a blind person. It was a huge help to study as a Counsellor. I did this for personal and professional reasons. I gained an excellent set of skills and a qualification, and I benefited massively from understanding more about ways of thinking, emotions and feeling, and most importantly understanding loss and the grieving process.

Do you think your disability has made you who you are today?

I have strong feelings about this…I feel for some strange reason this happened to me as a harsh wake up call. Before my eye condition my life was not going anywhere. I lived at home with my mum, I drank every night, I liked to smoke pot, I was not very outgoing or adventurous, and I had no good qualifications or a career path. As difficult as those years were trying to get my head around what had happened to me, it was a period of time when I became broken and slowly I started a rebuilding process. Between then and now, I have developed as a person, I have carved out a worthwhile career path for myself, I have met lots of fantastic people, and I feel privileged to have volunteered and worked for some great organisations giving me the experience and opportunity to help and support many people in varying ways. For example, working one-to-one with a person as a Counsellor, or delivering a workshop to a group on Assistive Technology.

Is there a particular question you get asked often because of your

disability?

“Can you not just wear glasses”
Or not necessarily a question “You don’t look blind”
My condition is related to my optic nerves, I have no problem with my eyes, so glasses will not make any difference. Also, most visually impaired people do not look blind. I think both of the above are due to a lack of awareness of sight loss in general. Surprisingly many people think that you are either fully sighted or you see total darkness, with nothing in-between. Similarly, people do not understand what a white cane is, or they expect everyone with a sight problem wears dark glasses, taps a white cane around and uses a guide dog, or as many call them a “blind dog”.

What are the positives of having a disability?

I think that my experience of my disability means that I have a different outlook on life. I am a very positive person, I feel that the worst is behind me in my life, and I try my best to enjoy most days and I look forward with hope. I am confident that overcoming the hurdles that I have, have given me the strength and skills to deal with hardship in life.

What are the negatives of having a disability?

Of course I acknowledge that life as a visually impaired person has challenges and difficulties. Because I have had sight, there are times when I know that something would have been much easier to tackle as a fully sighted person. Similarly, it’s tough when you find yourself in a situation where you are treated differently, or even abused for having a visual impairment. These can be harsh reminders of the fact that I have a disability and the happy bubble of life bursts leaving you a little vulnerable.

What would you say is a difficulty for you being VI / disabled?

I think the point that I mentioned above; the issues of socialising are difficult. It is hard to sometimes communicate or more importantly maintain communication are the difficulties. If I could explain to the world that I am very unlikely to recognise them when passing, and a polite “hi it’s such a body” would be great. Many neighbours, associates, friends and even family, will pass me and not acknowledge that it is them, therefore socially communication breaks down. I am sure there are people that no longer talk to me, as they feel that I have ignored them in the past. Where as, the truth is that I have walked by in my bubble and been oblivious to people around me.

As a person with a disability, what are the things you face on a daily /

weekly basis that frustrate you?
*In your home – Not knowing where something is if it has been miss placed. Since being visually impaired, I have been very organised, as I need to know where things are, so that I can find them easily.

*outside your home – I really hate it when people obstruct the pavements, the main culprits being drivers parking their cars inappropriately. It is very frustrating when walking along and having to go into the road around a vehicle to get past. I think some drivers forget that they need to leave sufficient space for a person to get past on the pavement; and this also includes room for a pram, wheelchair, etc.

Are there any tips or tricks you use in daily life you’d like to pass

on to another VI/ disabled person?

One of the biggest tips that I can give to another person with a visual impairment is to become confident with today’s technology. There are accessibility features on most popular devices today, that allow a person with little or no sight to get the most out of using them. There is so much that you can do with a smart phone, to help you be independent. The list is pretty much endless, but here are some benefits that might not be obvious: access print by using the camera, using it to help navigate, an accessible communication device in your pocket, look up bus/train times while out and about, audio description on videos/programs/films, get a picture described, plus all of the main-stream Applications are accessible. It can easily bring a person up-to-speed with their peers.

Do you use Assisstive technology in your daily living?

*Screen reader I am able to use many pieces of Assistive Technology due to my work, but personally I use JAWS on my work laptop and Voice Over on Apple products.

My main device that I use daily is my iPhone. It is such an important piece of technology for me. I use it to communicate by calling, texting or emailing, I use various social media to keep in touch and up-to-date with the world, I read the news, I watch TV/videos/films, I read books. Also, it is my magnifier, my note tacker, my calendar, my diary, my scanner reader, my audio book player, my radio, my GPS navigator, and much more. These are all things that historically I would have to buy as separate items costing a huge amount of money and would certainly not fit in my pocket.

What piece of advice would you give to someone newly diagnosed? Or going
through a deterioration in vision / or mobility?

I would definitely say speak to someone. Both professionals and others with similar issues. When the time is ready get practical help, whether that’s mobility training, or other things, get emotional support, maybe Counselling, self-help advice, peer support groups, and get out there and try your best to keep going. Try not let life stand still for too long, as roots can set in and it is then very hard to challenge yourself and get out of your comfort zone.

Any advice you’d like to give to a person with sight / no disabilities?

variety is the spice of life as they say. If you feel that someone maybe different to you, don’t make that negative judgement. Be open minded and why not accept some variety into your life. What’s the worst that could happen? You might meet someone new interesting, you might, if anything, learn something, and you just may be inspired.
Also, don’t park inappropriately on pavements.

Did you seek out any specialist services / charities to help you and your

family deal with your situation?

*RNIB Schools? I lost my job working for a Ford Dealership in the Motor Trade, so from here I attended an RNIB college in Loughborough.

I had mobility training from a Rehab Officer.
I had some Counselling.
I attended some social groups at my local blind society.
I did lots of volunteering to fill the gap in my skills and experience to help me seek employment.

Where can people find you out in the world?

FaceBook
https://www.facebook.com/glensheader

Twitter
@glensheader
@viparent_glen

Email
glensheader@gmail.com

❤❤ Thank you so much Glen for taking the time to be interviewed! Your journey with sight loss has definitely been an interesting one to read, I love how you’ve turned your negatives into positive’s, especially with becoming a counsellor, learning to understand yourself and help others is a great thing!

If you, or anyone you know, would like to take part in my Campaign, do not hesitate to contact me on the following:
Email:SassysWorld6@gmail.com
Twitter
Facebook

http://www.thinkingoutloud-sassystyle.com/category/disability-qa-campaign/

Why not take a look at the rest of the interviews so far? #DisabilityQ&A Series http://www.thinkingoutloud-sassystyle.com/category/disability-qa-campaign/




Disability Q&A #15 Sean Randall

Welcome back to my #DisabilityQ&A series.
Today’s interview is brought to you by Sean, we met on Twitter and I asked if he would like to participate, thankfully he said yes 🙂 his no nonsense approach with his eloquent writing echoes everything I’ve come across in the blind community.

Enjoy!

Tell me about yourself:

My name is Sean Randall. I’m 28 years old and I live in a village just outside of Worcester in England with my fiancée, 5-year-old daughter and Guide Dog.

What is your job?

I am an accessibility and technology specialist at a school for the blind and visually impaired. My workday is split pretty fifty-fifty between working with a student and his or her technology needs, and providing accessibility support for the college as a whole.

When teaching the students we can be working on practicing typing skills to writing computer software or anything in between. Students bring me any technology they want to learn to use better, and together we explore all the options and find techniques for improving their access. It’s a great feeling when a student who has never used a computer before can walk into the classroom and reply to her emails before moving on to her next task without any input from me at all. We’re just at the start of a new school year, so there’ll be a new intake of students to get to grips with, and I was pleased to learn that over the summer, all our former students got their places at university or ended up somewhere they were happy (one of my best pupils is now working with the BBC!)

The other half of my job is not as immediately gratifying but it *is* important. I manage our school network and technology from an accessibility point of view. This can involve anything from making sure new software the college wants to obtain is accessible to all staff or students, right down to deciding on specific manufacturers and suppliers for specialist devices (such as Braille Displays. We also run a lot of outreach events, where teachers and support staff from all over the country come to see what we do, and I answer lots of questions and help find paths through the education system for young people throughout the UK during these sessions. I get questions from young blind people themselves, their teachers, parents and carers, and even sometimes their friends. It’s a hugely rewarding job I do, with such a variety of tasks on any given day that I’m never at a loss for something to do.

What hobbies do you have?

I’m a huge reader. If I ever have 5 minutes to myself you’ll find me sneaking a few pages of my current novel: I enjoy science fiction and fantasy books in the main, although a good contemporary fiction novel or legal thriller sometimes hooks me. I follow technological, political, disability and accessibility news very closely, mainly because it’s the sort to impact me and my family and job the most, so I don’t read much non-fiction for pleasure because I like my books to whisk me off to somewhere pleasant for a while!

I also enjoy horror films, long walks, country music, goalball and good food and spend some of my time volunteering to help people with their technology over the phone or in their own homes if they need it. I dabble in software development too, my fiancée is quite partial to having a pet programmer who can whip up little computer programs to do her bidding.

What is the medical reason you have a disability?

I was born over 12 weeks prematurely, so my eyes weren’t fully developed. I needed Oxygen to survive, and that further damaged my retinas. I weighed less than a bag of sugar at birth. People often ask me if it would’ve been sensible to try without the Oxygen to keep my eyes intact, and I always tell them the same thing. Without Oxygen I would die. With damaged retinas, I simply need to be a little more creative to live the kind of life I want!

Have you had your Visual impairment / disability from birth?

Yes.

Which terminology do you prefer: Partially Sighted, Visually Impaired,Sight Impaired, Severely Sight Impaired or Blind?

Blind. Even though I don’t live in pitch blackness – I can see light sources in one eye – I don’t have any “useful vision”. Blind is a simple word with a simple meaning and it makes sense for me to use it to describe myself, and it has the added benefit of being true!

Do you have a cane, Guide Dog or neither?

A guide dog. I took the step of getting him when my daughter was born, because I knew we’d need to go places. True enough, the walks to nursery, the bakers, butchers and shops around town were made much more efficient and pleasant with him and he is a faithful companion and family pet when he’s not working. I was very against getting a guide dog until I had a pressing need, and the village where we live at present is probably a little too small for him really (I find myself walking him for the sake of it more than work). SO even though he’s loved and a huge part of the family I would have to think carefully about the need before replacing him when he retires in a few years.

If you could extinguish your disability, would you? – If not, please explain why.

If you’d asked me this question 5 years ago I would’ve been emphatic and firm and said no. I was happy in my skin with a quality of life I was content with doing what I wanted to be doing. All this changed when my daughter came along. We have a great time, but there are things having vision would improve: getting around is probably the biggest one, the freedom to hop into the car and drive off somewhere is strong. Also just being able to know where we are by looking, and to see what my daughter is up to without needing to keep an ear or a hand on her would be a big incentive for me to gain any vision I could.

For those who do not know much about your VI what can you see?

Just light. It’s enough to tell where the sun or brighter sources (windows, larger lamps etc) are coming from. I do get burned-out quickly, which is hard to explain, but for instance if I was standing in a room and you turned the light on and off a few times quickly my eye would stop processing things and I wouldn’t be able to determine if it was on or not. Sometimes I get random flashes of light that aren’t there, which can be confusing, usually when I’m very tired or unwell.

How has your disability effected you?

My disability has shaped my life, in many ways. Socially it’s made me very keen to help others, and I enjoy a good level of engagement within the blind community (I’m active on social media, mailing lists and so on). I don’t have many sighted friends, but those I do have I get on well with.

Physically, I don’t know what impact it’s had. I’m not particularly coordinated or skilled with my hands and fingers, perhaps that would’ve been different if I wasn’t disabled. I am quite fit – I can run a fair distance and spent the first few years of my daughter’s life carrying her around on my back.

Mentally, being blind has made me realise that if I want something, asking for it has to be done the right way. So many of my friends have asked for “help”, without being specific enough that the person in question knows what to do. For example when our daughter started school, it wouldn’t have worked if we’d just said “we want letters in an accessible format: how on earth is the school receptionist supposed to know what we find accessible? The spectrum of visual impairment goes from needing print a little larger than average to deaf-blind people reading Braille and nothing else, and blind people themselves can often do things in a number of ways. “Can you email us letters?” is what we said, and we get them that way and everyone is happy. I think the core lesson here is that you as a person with a disability need to have the awareness of what’s out there to help you and the ability or advocacy to communicate that where appropriate. This is where the sociability comes in, being part of the blind community on social media or otherwise gives you a great resource when you’ve got questions.

Do you think your disability has made you who you are today?

Certainly it’s made me do what I do. I can’t imagine I’d work in the disability sector if I didn’t have a disability myself. I’d like to think it’s made me a more tolerant, caring and understanding person. It’s hard to separate me from my disability because it’s always been a part of me; if I’d lived nearly 30 years with working eyes then maybe I could answer this one properly!

*Please give a positive example of how this has done so… Example: Not judging people by their appearance

Although it mightn’t appear positive to begin with, I think the one thing my disability has done for me is to not take any excuses. There’s no reason why someone with my eye condition and nothing else wrong with them couldn’t learn to do the things I do. Not the things I’ve chosen to learn (like computer programming), but the day-to-day tasks of maintaining a house, paying the bills, helping with homework and going to and from my job are all things that society expects of me, that I expect of myself and that I would expect of anyone in a similar situation.

Is there a particular question you get asked often because of your disability? If so, please explain below.

I think the most widespread question is sort of an umbrella “how do you manage?” and of course that depends on what you’re doing at the time. The average sighted person tries to imagine themselves doing the task in question with their eyes shut (making a cup of tea, sending an email, changing a nappy, chopping vegetables) and of course to them it’s a scary and worrying prospect. They almost invariably decide they couldn’t do it, and so they assume I have some amazing secret that enables me to work on their level. I’m as guilty as anybody of this – I’ve met people with one arm or missing fingers, or who can’t hear or speak, and of course I find myself wondering how I’d cope in that situation.

There’s no easy answer, either. And that’s because we adapt in hundreds of little ways to thousands of different tasks whether we’re disabled or not. There’s no magic solution, and I think people leave perplexed because they’re expecting something to make up for my lack of vision when in reality, I simply do things differently sometimes because I’ve never had it.

What are the positives of having a disability?

Learning that things are rarely impossible. It’s probably the best time in history to be disabled because of the profusion of technology. I can work, bank, shop, play, study, interact and absorb online with, in nine cases out of ten, very moderate adaptations to the way anyone else might do it.

One of the best examples is books. I used to buy second-hand paperback books from charity shops because I had a huge beast of a scanner, which would scan one page at a time into the computer so I could read the book. I’d buy old tatty copies so I could chop them up and feed the pages into the system, and spend about a month correcting the scanned text to something readable. Seriously, weeks on a single book. Today? I just buy the Kindle edition. I cannot express the glee that it gives me to know that in less time than I could walk to the shop and pick up a print copy of the book I can be reading it curled up in my dressing gown, lounging in the sun, or heading off somewhere on the train. And the point here, of course, is that the same holds true for you if you are sighted. The difference is in how we absorb the material, not how we get it. And that’s the key problem historically and one where the gap is slowly but steadily narrowing.

What are the negatives of having a disability?

I have two big downsides to my disability. First, I can’t live as spontaneously as I’d like. If I wanted to go on holiday, drive to a random restaurant for a meal, go and see a film or treat my fiancée to a day out I have to plan more than most do. I need to look at audio-description in the cinema, menus at restaurants, travel assistance for trains or aircraft and guidance to or around unfamiliar areas. None of the things are impossible, but all of them are less practical. Perhaps not all of them are completely necessary (you can argue we can watch a movie without the audio-description) but why not use it if it’s there? I don’t see this ever going away completely. Things are improving, the sheer variety of apps on the market for your phone for accessibility is a staggering testament to this, but unless we end up living in a society where we have little robots to be our eyes I imagine there will always be situations where another person is put on the spot to render some small assistance.

The second negative to being disabled for me is the lack of belief and understanding from the general public. It’s by no means the majority, but I have come across people who tell me that my daughter “will be a help”. Really? DO people honestly believe that my fiancée and I live such dreary and doleful lives that we had to have a baby to cheer us up with the understanding that she’ll be a working pair of eyes when she’s older? Well, yes. Some people clearly believe that. And it’s utter nonsense, of course. She’ll do her fair share of chores as anyone else (washing dishes is a chore but we can’t stop eating and when she’s old enough to help out around the home she’ll do so). But that would happen whether we or she were blind or not, the two just don’t conflate at all. I know the great public can be stupid en-mass (remember Boaty Mcboatface?) but how they can’t perceive that we lived perfectly viable lives before her birth but must be bringing her up as a slave to our vision loss is a mystery to me. It’s not just about having a child, of course. I tell someone I’m late for work and I get “Oh, but it’s so good you’ve got a job!”. I ask a company to email me something and I’m told “isn’t it amazing that you can do email?” and on one memorable occasion I was told that “you’re a star” when I came back from a public toilet. What on Earth is that all about? So if I had to put it into a sentence I’d say that this downside to being disabled is the negativity that people project on me as a result of it. I feel very sorry for those who lose their vision later in life because as well as their own uncertainties and confusion about how things will work, they have this huge cultural bundle of negativity to deal with as well.

What would you say is a difficulty for you being VI / disabled?

Perhaps my biggest personal difficulty is having a written signature that isn’t clear. I wasn’t instructed in the use of a pen at an early age. I have a vague memory of a week or so’s practice to open a bank account in my early teens, but that never followed through and so I can rarely duplicate a written signature the second time around. Luckily it’s something with time, effort and practice I should be able to resolve!

As a person with a disability, what are the things you face on a daily /weekly basis that frustrate you?

*In your home

I think my number one irritation at home is consistency. I use a variety of apps to read labels and scan bar codes of produce so I know what things are, and if they are perishable items (such as food) when they go out of date or how to cook them. I’ve found that there’s rarely a simple solution to knowing exactly where on the packaging the bar code or expiration date is. It’s brilliant that I can do so much of this stuff on my own, but frustrating when there’s no consistency of labelling between brands. I understand getting the information in Braille would be a huge cost and mean changes to the manufacturing process, but surely a directive that best before dates should be on one side or other of a product’s packaging isn’t too much to ask!

*outside your home

My biggest issue when out and about is again consistency and awareness. If the bus doesn’t stop in the same place as it did last time I got off, I may only be a few feet from a landmark I know about but that might as well be a mile. Perhaps this is an endemic issue of how mobility training for a blind person works, but it is very hard for me with no useful vision at all to have an overview of an area. I can learn a very specific route from point A to B, and along that route I can identify stable landmarks to assist me, but very rarely am I able to find points nearby any of those landmarks and from there know where I am. This again is something that is changing with technology and I must admit, on the rare occasions I get lost, the public are amazingly helpful. But it would be good if bus drivers were able to explain the difference between where the bus is and where it should be, if shop owners are careful not to obtrude their goods and car owners keep their vehicles on the roads not the pavements. It’s a lot of little things which can add up to an unsettling traveling experience and that which with a little forethought and curtesy would make life much easier not just for me I am sure, but for many blind people too.




Are there any tips or tricks you use in daily life you’d like to pass on to another VI/ disabled person?

I think my biggest tip would be to embrace whatever equipment or aids you need. Whether that’s clipping your socks together for a wash or getting an app on your phone to identify the colour of the pepper you’re chopping into your meal.

Do you use Assisstive technology in your daily living?

Screen reader:

Yes, on the computer, phone, tablet an TV.

Braille note :I use a Braille display when needing to make notes in meetings or to read back things when I’m in conversation.

Colour detector:

Occasionally, usually for food and drink (i.e. the colour of milk bottle tops etc.

Talking scales:

We have 2, my fiancée is an avid cook. I found the scales useful for measuring baby milk when we needed to do that.

Apps are a huge part of my life, because I use them for reading text, identifying colours and currency, working out what products are and how long they’ll last. I’ve probably spent over a hundred pounds on apps on top of the cost of the iPhone itself, but its seriously worth it. Less used apps are handy for working out if the lights are on, GPS, getting lifts in bigger cities, playing games etc.

What piece of advice would you give to someone newly diagnosed? Or going through a deterioration in vision / or mobility?

I think the best bit of advice is that there’s stuff out there to help and people who can help with it. Losing anything is bad, losing part of your sensorium must be a huge shock and adapting is never easy.

Any advice you’d like to give to a person with sight / no disabilities?

Don’t assume that because you can’t do something with your eyes closed that it’s impossible for someone else.

Did you seek out any specialist services / charities to help you and your

family deal with your situation?

No. I had support at school as a blind student, but remember, “my situation” was normal for me as an adult.

Where can people find you out in the world?

I’m on twitter @cachondo, write blog posts on my LinkedIN profile at http://UK.linkedin.com/in/AccessibleSean and review good books on Goodreads at https://www.goodreads.com/Seanrandall

You can always email me on contact@SeanRandall.me or, if you like to talk and have a smartphone, send me a message on roger at https://rogertalk.com/cachondo

❤❤ Thank you so much Sean for taking the time to be interviewed! this is definitely an interview I’ll be reading and rereading. Your thoughts and values show that with a positive mental attitude and the right support we really can do anything We set our minds to. ❤❤

If you, or anyone you know, would like to take part in my Campaign, do not hesitate to contact me on the following:
Email:SassysWorld6@gmail.com
Twitter
Facebook

http://www.thinkingoutloud-sassystyle.com/category/disability-qa-campaign/




Disability Q&A #14 Amelia Khan

Hello everyone and welcome to a new year and a continuation of my #DisabilityQ&A series!

To kickstart the new year we have Amelia, she is full of fun positivity and most importantly honesty! I’m very lucky to call her my friend! I hope you love her interview as much as I do!

Over to you Amelia…

Tell me about yourself:

Hi I’m Amelia Khan, 26 and I live in the sunny south (one can only dream)
What is your job?
I work in the Charity Sector

In my spare time I enjoy keeping fit, having me time, socialising and following technology stuff.

Now we know the basics, can we learn a bit more about you?

What is the medical reason you have a disability? i’m Visually impaired, my condition is called Peter’s Anomaly
Have you had your Visual impairment / disability from birth? Yes.

Which terminology do you prefer?

Blind – but generally not amazingly fussed.

Do you have a cane, Guide Dog or neither?
Cane
If you could extinguish your disability, would you?

No, my disability has helped me to be the person that I am today. I come from a culture where people with disabilities are made to feel inadequate – people see the disability rather than the ability. This is reflected in the way that I am perceived by people within my own community. But My disability set me apart from their thinking, as I was singled out by them. Therefore, I am more open minded, don’t judge others as easily as they do, and respect people for who they are, as apposed to whether they have a full working body. But, overall, it has shaped my outlook on life and has encouraged me to push boundaries and challenge stereotypes.

For those who do not know much about your VI what can you see?

Nothing… but my brain does try to give me visual representations of my surroundings based on what people tell me and what I think is around me. However, my brain does decide to branch out sometimes and gives me some exciting colours in the form of random shapes (also known as floaters)

How has your disability affected you?
*Socially – I find it hard to meet knew people, get out as much as I would like to, and starting a conversation with people for the first time due to lack of eye contact and being wary of how they might perceive me.
*physically – I am not as active as I used to be, but slowly working on that one. My eye condition means that my eyes look smaller than other people’s, but thats no bother cause I still look hot 🙂
*Mentally – since losing my remaining vision, I have to really battle with myself to try new things, stop fearing the worst possible scenarios, I try and come across as more confident than I actually feel at times, which then makes me more anxious because I am trying to hide the fact that I am afraid/not comfortable with the situation.

Do you think your disability has made you who you are today?

Yes – people see disability as a limitation, so my desire to prove people wrong, this has made me determined to achieve and push myself to my limits even if it is hard initially, but it has definitely made me a stronger and confident person.

Is there a particular question you get asked often because of your disability?

How do you choose your clothes – I am someone who likes to look presentable, so I have a secret system to aid me in this task. It obviously works because everyone is amazed at how me as a totally blind person can coordinate my hijab, top, trousers and shoes.

What are the positives of having a disability?

Jumping cues, especially at train stations, not waiting for the ticket barriers, train staff ensuring you get a seat, people having little expectations of you, so no pressure to live to other people’s standards (of course that doesn’t mean that you should not try to be the best that you can), the funny reactions I get when walking with my cane – either people jumping to avoid me, a group of people parting like the sea or someone just tripping over my cane as they were not looking where they were walking.

What are the negatives of having a disability?

When people make assumptions about what you cannot/can do. When people talk to your companion rather than you. When people talk to you in a tone that makes you feel like a 2 year old. Having to deal with the annoying DWP no matter if you are unemployed (on ESA) or in work (using Access to Work),

What would you say is a difficulty for you being VI / disabled?

The time it takes to complete simple tasks such as making a cup of tea, or making toast, or walking from A to B.
As a person with a disability, what are the things you face on a daily / weekly basis that frustrate you?
*In your home – finding my stuff that has been moved without my knowledge,
*outside your home – having to navigate street furniture, staring people and badly parked cars.

Are there any tips or tricks you use in daily life you’d like to pass on to another VI/ disabled person?

*Keeping socks paired in the washing machine? – Maybe use pegs/hooks to keep them together.

*Colour coordinating your clothes – either wear black trousers with a coloured top – or the other way round. Yes, colour detectors do exist but I don’t find them amazingly reliable.

*Applying make up? just splash the foundation on your face and hope for the best *joke!!!* – I don’t wear make-up

Do you use Assisstive technology in your daily living?

Yes, I use a screen reader called JAWS, a Braille note to access the internet, read books and write notes.
I use a liquid leveller for making drinks. I also use apps like Google Maps when I’m out and about.
What piece of advice would you give to someone newly diagnosed? Or going through a deterioration in vision / or mobility?

Initially it seems like your world has stopped, but this is to be expected. Ensure that you get the right support and just go with your emotions. If you don’t feel that you are ready to do something such as work or going out on your own, then don’t. Try and make a list of all the positives in your life and review it. Try and reflect on what you have achieved and assess your progress, only then will you see how life can be rebuilt again.
Yes sure it will be different, but its not the end of the road. Most of all, I would say – don’t feel like you have to go it alone, get support from family/friends, professionals if required.,

Any advice you’d like to give to a person with sight / no disabilities?

Dare I say it, we are all ‘normal’ people, so next time you see a person with a disability/visual impairment, stop and say hello instead of watching them as if they are gonna explode into a million bits any second.

Did you seek out any specialist services / charities to help you and your family deal with your situation?
Yes. I have had support from local and national sight loss charities.
Where can people find you out in the world?
*Blog  https://travellingwithvision.wordpress.com/
*FaceBook https://www.facebook.com/travellingwithvision/
*Twitter – @amelias_words

Anything you’d like to add my lovely?

Life can definitely throw twists and turns which seem unbearable at times, but I wouldn’t change my sight loss for the world, as someone once wisely said “your disability doesn’t define you, but never forget how it has helped to shape you”.

❤❤ Thank you so much Amelia for taking the time to be interviewed! I love your positive attitude, and your sense of humour! It clearly shows your drive and determination to see the positive in life rather than the negative. I think we could all learn that lesson from you! Your honesty, sincerity and humour are fabulous traits to have. Thank you for sharing your story and giving some fab tips! ❤❤

If you, or anyone you know, would like to take part in my Campaign, do not hesitate to contact me on the following:
Email:SassysWorld6@gmail.com
Twitter
Facebook

If you enjoyed this interview why not check out the others in the series so far?
Interview 1
Interview 2
Interview 3
Interview 4
Interview 5
Interview 6
Interview 7
Interview 8
Interview 9
Interview 10
Interview 11
Interview 12




Sorry For My Absence

I’m sorry for my absence. I’ve been contemplating writing this for a while now. But i’ve been holding back.
The reason for this is that i’ve begun overcomplicating things in my own mind.

I started this blog to share with you the rollercoaster ride that seems to be my life. I wanted to share everything from the highs to the lows hopefully attempting to show that although having a disability sucks sometimes, there’s a lot in life for us all to be grateful for, and in my case, find the funny side of it all.

As more time went on I realised I didn’t just want to share my story but share other people’s stories too.
I wanted to be a platform for people to learn something new, become more open minded and even to be a resource to for those who may be seeking it.

I have a thirst for knowledge and a passion to educate and support others.I put my energy into creating content that I hoped would be of use to others, and put my own thoughts and stories on the back burner, until I thought they would be of use.
I’m open and honest on this blog and fingers crossed it’s somewhat entertaining…

But i’ve been overcomplicating things… I wanted my blog to be a resource, a platform, a network and a home to share it all.
I started my campaigns in the hopes of creating a community. I wanted to be inclusive of everyone; fromAutism to arthritis or cystic fibrosis to depression, right through to those that care for people with a disability.

My #DisabilityQ&A took off, and I was excited to be sharing peoples’ stories, and i’m extremely grateful for those of you who got involved!

I tried my best to create the same enthusiasm with my other campaigns, as well as trying to encourage those with any #Disability to get on board with no avail.
I was disheartened somewhat but I had a million and one other ideas for blog posts that I thought would be interesting and useful. So I kept going.

Blogging not only became my passion, but it became an obsession. If I wasn’t writing content I was thinking of what material to use and researched it to make sure my facts were correct.
I joined in fabulous linkys, I had a tribe and I spent all my spare time talking to bloggers, reading their awesome blogs and promoting as much as I could.

I was having the best time, I was making new friends around the globe, learning new things and achieving what I hoped with my little corner of the internet.

But then I began to overcomplicate everything.

I was in a tribe that were all on a similar level to each other, constantly supporting one another and giving continuous encouragement and praise.
It was fantastic, I couldn’t have asked for a more supportive and kind bunch of people to be around.

But the further I delved into the blogging world the more I realised how technical things got.
I was knee deep in blog posts or conversations that revolved around stats, branding and monitisation.

I became interested in raising my stats; the prospect of working with brands who could help further my campaigns, give my blog exposure and in turn become the platform I hoped it could be.I thought I could really make a difference; doing reviews, giving talks and getting more people to share their trials and triumphs.

I was eager and excited at the prospect of doing something good: exposing other campaigners and my little blog being recognised for creating a community of support and resources.

So I joined blogging groups, blogging platforms that would connect brands with bloggers and even emailed PR’s and organisations to introduce myself and explained my ambitions for the blog.

And that’s where things became complicated.

I quickly realised that I was too niche for brands, PR’s and even organisations to want to work with me.
Review opportunities came in the form of fashion, kids accessories, beauty or luxury jewellery.
These reviews were not quite what I was looking for, and the odd time I thought I could work with a brand to review things from a disability standpoint I was stopped at the first hurdle.
“5000 followers minimum to apply”

I appreciate each and every follower and reader of my blog.I want people to follow me because they have a genuine interest in my blog and my campaigns.
I’m not a parent blogger, fashion or beauty blogger.
Although I have interest in fashion and beauty i’m not going to pretend I follow the latest trends… I have little to no knowledge of these things to even warrant blogging about them.

I was also getting nowhere with contacting PR’s/ organisations via email. The few times I was lucky to get a response I was congratulated for what I was trying to achieve but ultimately they did not have the time or budget to work with me.

At this point I was surrounded by fabulous bloggers acing it with stats, brand work and even getting paid work! I couldn’t be happier for my friends,but I found it increasingly overwhelming and at points unworthy to be in their company.

I wasn’t achieving what they were.

Even the bloggers I was reaching out to for my campaigns seemed no longer interested in joining them.

I became deflated and even at times frustrated… I was trying to make my blog into a place that was more about the community than it was about me.

Even though I had blog post ideas zooming around my mind and cluttering up my drafts; I started posting less and focused more on promoting the blogs myself and others had already taken the time to write.
After a while I slowed down on the amount of linkys I joined too.
I began to notice that unless I was one of the first people to link up, my posts I pretty much got ignored.
I used to spend hours reading and commenting on blogs and even sharing them over my social media, but the less often I shared or commented I began realising that people clearly weren’t interested in my blog.
It had become a: you scratch my back, i’ll scratch yours mentality…

Aside from the few people that genuinely enjoyed reading my blog, left me meaningful comments or shared my posts my stats dropped faster than an avalanche.

At this point I was done with spreading the blog love. I put 100% effort into my posts, and I wanted nothing more than to educate people who had little to no knowledge of disabilities and be a place for those with disabilities to find support and even new ideas.

By the time I had been in hospital for a week: after breaking my leg I wasn’t even sure if I should blog about it.
I’d become so wrapped up in wanting to be a space to share knowledge, ideas and experiences I thought people wouldn’t be interested in hearing my holiday dramas.

I began my blog to share my story, yet in my mind I feel it’s become something bigger than that.
I guess that it’s because I wonder often, what makes me so special that I should spend day after day talking about myself.
What is it that makes me more interesting than any other blind or disabled person out there?

And the answer is, there isn’t.

I’m just another blind person talking about their disability.

But it’s my space.

If my little corner of the internet can educate one person or give another disabled person a someone to relate to then i’ve done my job.

Stats, brands and opportunities are great, but this is no longer my focus.
Of course if a worthwhile opportunity were to come knocking, I would grab it with both hands.
But most importantly i’m grateful for my lot, and anything else is a bonus.

“Comparison is the thief of joy.”
– Theodore Roosevelt.

Disability Q&A #13 Holly Scott – Gardiner

Welcome back to my #DisabilityQ&A campaign 🙂

Today’s interview is brought to you by Holly, she has quite a social media presence and is a fantastic advocate for people with disabilities, especially visual impairment. I got in touch with her via Twitter and asked if she would like to join and she agreed 🙂

Over to you Holly;

Tell me about yourself:
Hi, I’m Holly
22
and I live in Coventry for university, but York is my home.
What is your job?
I am a student, studying Spanish at Coventry University.

What hobbies do you have?

Reading and reviewing books, writing, making videos, and travelling.

Now we know the basics, can we learn a bit more about you?

What is the medical reason you have a disability?

I have LCA (Lebers congenital amaurosis).

Have you had your Visual impairment / disability from birth?

Yes

Which terminology do you prefer: Partially Sighted, Visually Impaired, Sight
Impaired, Severely Sight Impaired or Blind?

Blind.

Do you have a cane, Guide Dog or neither?

I am a guide dog handler but was previously a cane user.

If you could extinguish your disability, would you? – If not, please
explain why.

I don’t really have a clear answer for this. I am really comfortable with
who I am, and am not sure that, if given the choice, I’d want to see. When
people go blind they require a huge amount of rehabilitation and I believe
the same would be true if I regained my vision, especially as I’ve been
blind since birth.

My blindness is part of my identity, it has shaped my choices and
experiences and I’m not sure what my life would be without it at this
point.

For those who do not know much about your VI what can you see?

I have light perception only.

How has your disability effected you?
*Socially

I think that socially there are two sides to it. On the one hand, people
feel quite uncomfortable when faced with disability and this can certainly
affect the way they behave around me. On the other hand I have met many
people through travel and attending events that I would never have come
across otherwise. In many ways I believe that blindness has given me the
opportunity to expand my world view.

*physically

Although my eye condition doesn’t affect me physically I do have joint
problems, most prominently my hips, that cause me pain. I am still able to
do almost everything, though found I wasn’t physically able to participate
fully once I joined my university’s ice skating society this year.

*Mentally

I get very tired sometimes, I suspect from sensory overload which can be
quite disruptive, but in general I am absolutely fine 🙂

Do you think your disability has made you who you are today?

I think I have had experiences that I wouldn’t have otherwise, for example
making friends with people in many different countries. This has lead me
to travel which is an amazing thing to do, and I’m glad I’m doing it now
I’m a student and have the time!

Is there a particular question you get asked often because of your
disability?

I often get asked why I’m blind/what’s wrong with me. Unless the person
has a reason for asking, for example they have become friends with me, or
they are doing so for medical purposes I usually decline to answer. I feel
like there are many more interesting things about me, and strangers should
get to know me first, rather than fixating on my disability.

What are the positives of having a disability?

Shared lived experiences with a diverse community, opportunities for
travel, creativity to find a work-around for inaccessible situations.

What are the negatives of having a disability?

You often have to work harder to access things which can be tiring and
frustrating.

What would you say is a difficulty for you being VI / disabled?

The most difficult thing for me is constantly challenging peoples
expectations of blindness. Sometimes I just want to go somewhere and not
have to educate, but at the same time I believe that education is really
powerful.

As a person with a disability, what are the things you face on a daily /
weekly
basis that frustrate you?
*outside your home

I don’t really like to be touched, especially by strangers and it
frustrates me that people will often grab me without asking. I am always
grateful to receive an offer of help, as I have the choice to accept or
decline. However when that choice is taken away from me I feel very
uncomfortable.

Are there any tips or tricks you use in daily life you’d like to pass on
to another
VI/ disabled person?
*Colour coordinating your clothes

I learnt what colours match and I pair my clothes using that knowledge.

*Applying make up?

I apply all my own makeup, and have made a video tutorial explaining how i
do this. I’m planning on making more in the future as I realise it’s an
area where we are lacking in information.

Do you use Assisstive technology in your daily living?

Yes, I use Blindsquare: this is a GPS app designed for the blind.
I also use TapTapSee: A photo app that briefly describes images that you have taken whilst in the app itself.

What piece of advice would you give to someone newly diagnosed? Or going
through a
deterioration in vision / or mobility?

Gain as many non visual skills as you can. People think when they lose
their sight that they will become helpless, but this doesn’t have to be
the case. As a blind person you can live a completely full, independent
life. But it takes time and effort. Seek out your local sensory support
service and request to receive services from them. If you know you are
going blind then practise skills under blindfold. It might be scary at
first but you’ll know you are prepared, rather than feeling like you’ve
fallen in at the deep end once you lose your vision.

Surround yourself with positive blind role models. Ask them how they cook,
or clean, or use their computers. There are no stupid questions. Challenge
your preconceptions of blindness, there are so many things you can do as a
blind person.

Any advice you’d like to give to a person with sight / no disabilities?

Never assume that a blind person can’t do something, just because they are
blind. Maybe it takes longer for them to find a specific doorway, or they
go about it a different way, but the way we navigate, or cook, or raise
children is just as valid. Always ask before jumping in to help, and be
willing to learn something new 🙂

Did you seek out any specialist services / charities to help you and your
family
deal with your situation?

Not really, but as a young adult I have attended activities ran by VICTA a number of times.




Where can people find you out in the world?
*Blog: http://catchthesewords.com
*YouTube: https://www.youtube.com/user/holly2094
*FaceBook: http://www.facebook.com/catchthesewords
*Twitter: http://www.twitter.com/catchthesewords
*Instagram: http://instagram.com/holly2094
*Email: holly@catchthesewords.com

Thank you Holly for taking part. in this series. I found your interview extremely interesting and your thoughts definitely opened my eyes to yet another perspective on disability! 🙂

Please don’t forget to follow her links, and why not share the love? Leave her a comment, we would both appreciate it!

If you, or anyone you know, would like to take part in my Campaign, do not hesitate to contact me on the following:
Email:SassysWorld6@gmail.com
Twitter
Facebook

If you enjoyed this interview why not check out the others in the series so far?
Interview 1
Interview 2
Interview 3
Interview 4
Interview 5
Interview 6
Interview 7
Interview 8
Interview 9
Interview 10
Interview 11
Interview 12




Disability Q&A #11 Deborah Barrows

Welcome back ladies and gentlemen to the newest instalment of my disability Q&A campaign series 🙂

Today’s interview is brought to you by a wonderfully strong and courageous woman called Debra, we met online and I can honestly say that not only is she such a lovely person, But her blog is filled with enthusiasm and knowledge!
Without me continuing to ramble on, I shall let Debra share her story with you…

Tell me about yourself:
My name is Debra Barrows and I am 34. I live in Coventry New York with my husband, stepson, rainbow baby and fur baby.

My Jobs include being a Household Manager, Ordained Minister, Party Planner and Blogger.

My hobbies include creating my own jewelry, crafting with my kids, making educational supplies for my kids, and decorating my home.

Now we know the basics, can we learn a bit more about you?

What is the medical reason you have a disability?
I was diagnosed with Heavy Medal Poisoning (Arsenic and Cyanide). I now deal with multiple health issues.
Insulin Pump dependent Diabetic
Fibromyalgia (chronic muscle pain)
Neuropathy (chronic nerve pain)
Spondylosis (lower spine is fused together)
Charcot Arthropathy (weakening of the bones in the foot)
Degenerative Connective Tissue Disease (loss of connective tissue around joints)
Degenerative Bone Disease (brittle bones)

Have you had your Visual impairment / disability from birth?
I was diagnosed in 2008.

Do you refer to yourself as a person with a disability? If not, why not?
In general, I do not. I try to overcome my issues on a daily basis. When others know that you are disabled they seem to over help. I find this annoying.

Do you tell others about your disability? Or do you prefer to keep that to yourself until you are comfortable with the person knowing?
I hold off telling until I have too. I have found that people who see me on a good day think that I am just trying to get sympathy. Meanwhile I hate being seen as disabled because I hate the look of pity from others.

Do you use any mobility AIDS such as a wheelchair or walking stick?
I have an Insulin pump, molded wrist splints for both hands, a walking brace for my left leg, and a leopard print cane.

If you could extinguish your disability, would you? – If not, please explain why.
Yes, YES, and YEEESSSS! Before the Heavy Metal Poisoning, I was very active. I worked on farms; I was a nurse (my dream job). I did not have constant pain; I could take a Tylenol for pain and go on with the day. Now I have multiple pain medications that do not touch the pain somedays and then be couch bound for days sometimes. I could eat anything now too much milk affects my blood sugar levels. I have to be careful what I do constantly because if I sit too hard I can break a bone. Yes I wish for my disabilities to be no more constantly!

How has your disability affected you?

Socially I do not go to crowded places to avoid being bumped into. The simplest of touches can send me into a spiral of pain. Sometimes the simplest of touches can also send me off balance and I have to struggle to get back to my feet.

Physically I am weakened. My bones can easily break from the slightest of pressure. My muscles have deteriorated in my legs. The constant varying levels of pain throughout my body makes the simplest of daily routine difficult.

Mentally I am not as sure of myself and who I am. I used to have a life path I was following it to a T. Now I constantly redefine what I can do daily. This wears on me. I get into slumps where I think I am no good for myself or my family. I have to recenter myself spiritually as to not have a depressive episode.

Do you think your disability has made you who you are today?
Yes. If I had not become disabled, I would never understand what others are dealing with. I have a real understanding for what pain is and how it can destroy lives. That is not something I could have ever understood from all my nursing books.

Is there a particular question you are asked often because of your disability? If so, please explain below.

Why do you have a handicap sticker, you look fine to me? Because there are days when I do not have to wear my braces or use my cane people assume I am fine and am trying to use the system. To be 100% honest I hate my handicap sticker!
However, there are days I would never make it into a store if I had to walk farther than the handicap parking space to get to the wheelchair inside.

What are the positives of having a disability? I understand others better.

What are the negatives of having a disability? Dealing with it all is very frustrating since I know what I used to be able to do.

What would you say is a difficulty for you being disabled?
Myself. I struggle to accept this is my life. Going from a strong healthy active 27 year old to waking up unable to move is hard to adjust to. I fought hard for the last 8 years to get to where I am. Actually, 6 years for the 2 years before my husband coming back into my life I just accepted what the doctors had to say and was ok with being wheelchair bound for the rest of my life. I had given up. My husband helped renew my faith in God and myself. Without him I would probably still be in that wheelchair.
As a person with a disability, what are the things you face on a daily / weekly basis that frustrate you?

In my home, I deal with struggles with simple things like washing my hair, so I cut it from waist length to shoulder length. I have handles in my shower. I have an electric jar opener. I have rugs so I do no slip. My furniture is arranged so there is always something to hang onto if I feel myself falling. These things help with the frustrations when I can’t do things for myself.

Outside my home, the things that frustrate me are people who think they know me and judge me. Stairs are horrible. Uneven ground and grass that is too tall trip me. Extreme changes in the weather affect my joints. I hate walking from my car on a hot day into an air-conditioned building. My joints stiffen and my fibromyalgia ticks in. I am the woman wearing a coat in 80-degree weather. People who bump into other people.

Are there any tips or tricks you use in daily life you’d like to pass on to another VI/ disabled person?
I find that organizing everything to a specific place helps. There are days I am stuck in bed. I know where to tell people to get my medications from, where the bill I need to call on is, what binder has the kids information, what closet on which shelf has the kids’ stuff for their appointment.

Do you use Assistive technology in your daily living?
I do not. Technology fails. I also live in a dead tower zone. I use a wall calendar and pocket calendar for everything. I put all appointments on both so I always have a calendar near me. Routine is my friend.

What piece of advice would you give to someone newly diagnosed? Or going through a deterioration in vision / or mobility?
Find supportive people. No medication, no assistive aide or gadget is going to help you through the mental workout you are going to endure. People who truly love you will be there to help you, love you and push you.

Any advice you’d like to give to a person with no disabilities?
Do not assume you understand. You have never felt what the person with their disability had felt. Every person is different, everybody reacts differently. Do Not assume to understand!

Did you seek out any specialist services / charities to help you and your family deal with your situation?
No.

Where can people find you out in the world?
http://crossingnewbridges.blogspot.com/
https://www.facebook.com/CrossNewBridges/
https://twitter.com/CrossNewBridges
Crossingnewbridges@gmail.com




Thank you Debra for sharing your story! I’m in all of you, the courage and resilience you have is amazing! You prove that no matter what happens we always have fight left in us!
I hope that people reading this truly understands the meaning of an invisible disability, just because someone isn’t using an aid or crying out in pain, does not mean that they are not suffering and having a hard day with their disability.

You can find out so much more about Debra, her family and how she hopes to support others by visiting her fabulous blog!

Please don’t forget to follow her links, and why not share the love? Leave her a comment, we would both appreciate it!

If you, or anyone you know, would like to take part in my Campaign, do not hesitate to contact me on the following:
Email:SassysWorld6@gmail.com
Twitter
Facebook

If you enjoyed this interview why not check out the others in the series so far?
Interview 1
Interview 2
Interview 3
Interview 4
Interview 5
Interview 6
Interview 7
Interview 8
Interview 9
Interview 10




Disability Q&A #10 Holly Tuke

 

Welcome back to my disability Q&A . Today’s interview  is brought to you by Holly, some of you may know her on social media as life of a blind girl.

Hol and I met on Twitter, we got chatting and soon realized that we both had a passion for changing peoples’ perspectives.

She is caring, bubbly and funny and I am proud to call her one of my closest friends!

Over to you my lovely…

Tell me about yourself:

Hello I’m Holly, I’m 20 and live in the United Kingdom. I am currently a student, studying Children, young people and families in the hope of working with blind and visually impaired people when I graduate. My hobbies include playing the flute, seeing friends, listening to music and all sorts of stuff really.

Now we know the basics, can we learn a bit more about you?

What is the medical reason you have a disability? Retinopathy of prematurity

Have you had your Visual impairment / disability from birth? Yes

Which terminology do you prefer: Partially Sighted, Visually Impaired, Sight Impaired, Severely Sight Impaired or Blind?

Severely sight impaired or blind

Do you have a cane, Guide Dog or neither?

I have a cane.

If you could extinguish your disability, would you? – If not, please explain why.

Yes I think I would.

For those who do not know much about your VI what can you see?

Not a lot…light and dark and close up hand movementsF.

How has your disability affected you?

Socially

I have felt socially excluded/isolated at times.

physically

Nothing really

Mentally

I have had a couple of really low points but have got through them and I accept my disability so much more now. I do have my down days but I know how to deal with them so much more now.

Do you think your disability has made you who you are today? Please give a positive example of how this has done so… Example: Not judging people by their appearance

Yes it has definitely made me who I am today and shaped me in so many ways. A positive example is that I have learnt to not judge others and really get to know them. ‘don’t judge a book by its cover’

Is  there a particular question you get asked often because of your disability? If so, please explain below.

‘What can you actually see?’ because I have such little vision.

 

What are the positives of having a disability?

There are quite a few positives of having a disability. Discounts on various things, being able to help other blind/visually impaired people are just a couple.

What are the negatives of having a disability?

Not being able to see the beauty in this world, not knowing what my friends or family look like.

What would you say is a difficulty for you being VI / disabled?

Not being able to go to anywhere I want; I have to learn routes.

As a person with a disability, what are the things you face on a daily / weekly basis that frustrate you?

In your home

Cooking things sometimes

Outside your home

Planning ahead for things such as train assistance, I can’t just make an instant decision of going somewhere. Also, sometimes mobility.

Are there any tips or tricks you use in daily life you’d like to pass on to another VI/ disabled person?

Keep clothes colour-coordinated. When applying make up maybe count how many times you need a certain thing on such as powder.

Do you use Assisstive technology in your daily living? c.

I use a lot of assistive technology.

Screen-reader: Jaws and apple VoiceOver, sometimes NVDA.

I use a braille display.

There’s loads of apps that I use to help me in my daily living. Tap Tap See, Cam Find, KNFB reader or other apps that do the same thing. I also use Ariadne GPS, BlindSquare and apps such as National rail, The Trainline etc.

I sometimes use a liquid leveler and talking scales.

What piece of advice would you give to someone newly diagnosed? Or going through a deterioration in vision / or mobility?

Admit that you need help or support; it doesn’t mean that you’re weak or struggling. Also, as hard as it it is at times don’t let your barrier be a barrier.

Any advice you’d like to give to a person with sight / no disabilities?

Don’t just assume, ask.

Did you seek out any specialist services / charities to help you and your family deal with your situation?

 

I haven’t used them a great deal but the ones that I have used are The Amber Trust, RNIB, Action For Blind and Blind Children UK.

Where can people find you out in the world?

Blog: www.lifeofablindgirl.wordpress.com

FaceBook: www.facebook.com/lifeofablindgirl

Twitter: Hollynataliet

Instagram: lifeofablindgirl

Email: lifeofablindgirl@gmail.com




 

 

Thank you Holly for sharing your story, I hope people find your tips and explanations useful!
You can find out so much more about Hol, her disability and how she hopes to support others by visiting her fabulous blog!

Please don’t forget to follow her links, and why not share the love? Leave her a comment, we would both appreciate it!

If you, or anyone you know, would like to take part in my Campaign, do not hesitate to contact me on the following:
Email:SassysWorld6@gmail.com
Twitter
Facebook

If you enjoyed this interview why not check out the others in the series so far?
Interview 1
Interview 2
Interview 3
Interview 4
Interview 5
Interview 6
Interview 7
Interview 8
Interview 9




 

 

Disability Q&A #9 Kate

Hello and welcome back to the newest instalment of my disability Q&A 🙂

Today’s interview is brought to you by a wonderful lady named Kate! We met on the Internet: she is so kind, caring and fascinating! I hope you learn something new 🙂

Tell me about yourself:

My name is Kate, I am, ahem, forty-four, a married mother of two, living in Australia. Once upon a time, before my nine and six year old came into the world, I was a graphic designer but now I like to call myself a writer. I dream of becoming a published memoirist as I currently write two memoirs, and have an idea or two for works of fiction and children’s books. I also write for blogs.

Now we know the basics, can we learn a bit more about you?
What is the medical reason you have a disability?
I have Usher syndrome, the most common genetic cause of combined deafness and blindness. More than 400,000 people are affected by this disorder worldwide. (Don’t quote me on this information. I totally did a cut and paste.)
Have you had your disability from birth?

I am adopted, so have no family medical history at all. When I was two, I was diagnosed with severe hearing loss. My mother hadn’t been concerned that I was not yet speaking because my older brother was slow to become a talker. (And then became an annoyingly slow talker.) It was only when a family friend who had experience with deaf children voiced his suspicion that I was finally taken to a specialist and diagnosed.
I was sixteen whenI was diagnosed with Retinitis Pigmentosa, a progressive vision disorder which causes the light-sensing cells in the retina to gradually deteriorate. That diagnosis was a shock. I was aware that, for as long as I could remember, I had trouble seeing in the dark. I never told anyone, as I thought it was just something I couldn’t do, just as some kids couldn’t run fast, or weren’t good at art. I just couldn’t see well in the dark. And sometimes, I would bump into things. But I never thought it would be something as serious as RP.
I have not received genetic testing for confirmation, but the two conditions together strongly suggest I have Usher syndrome Type 2. My diagnosis was that I would be totally blind by forty, which has not been the case. Winning!

Do you refer to yourself as a person with a disability? If not, why not?

I do refer to myself as a person with a disability or two, though rarely do I even consider the disability. I am not aware of what I cannot hear, I am not aware of what I cannot see. For me, the way I am is my normal. Yes. I have two disabilities but they are as much a part of who I am as my hair or eye colour. They are two of the many things that make me, well, me. I don’t wake up and feel like some of my hearing is missing. I don’t wake up and go, hang on, where did my eyesight go?!

Do you tell others about your disability? Or do you prefer to keep that to yourself until you are comfortable with the person knowing?

This has been a lifelong dilemma. Shall we start at the beginning? With my hearing impairment, I always kept it hidden. At school I never wore my hair back. I thought I could fool people. And it turned out I did. My art teacher, who I had worked closely with for two years, had no idea I was hearing impaired and wore hearing aides. With my vision impairment, I would never tell anyone until I was comfortable with the person knowing, and that was quite often when it was becoming uncomfortable with them not knowing. I remember one friend thought I was just hilariously drunk when I stumbled around in the dark.
With employment, I secured my first job through a disability employment scheme. No hiding then. But after that first job, I never told anyone before I had secured the job, and worked long enough to prove myself. Then, ever so nervously, I would wear my hair back and just let them figure it out for themselves. It was never a real issue, except once when it was extremely awkward as my idiot boss said to me, ‘I thought you sounded like a deaf person.’ Like I said. Idiot.
With my sight, I was forced to disclose my condition when I had to ask for time off to have cataract surgery. Cataract surgery at 29? I had some explaining to do, and that boss couldn’t have been nicer.
Since having children, and being in the school community, I have had to be open with the teachers. To save me from awkward situations and also to let them know my children are pretty damn special, well, they are, I let them know so they understand why my two are sensitive and empathic. But also, why they are mature beyond their years and need looking out for so they don’t get depressed too. It is a big deal to know your mother is going blind.
At the beginning of this recent school year, I dreaded going through the motions of telling each and every teacher I, or my children, would have contact with. One part of me hated the other part of me for it, but the sensible me decided to get the principal to just tell the whole school teaching community in one hit. Bam. My story was out. The silly me still hasn’t quite forgiven the sensible me. Especially when, the very next day, one teacher jokingly said to me, over the loud home-time music, ‘you don’t need to wear hearing aides to hear that!’
There is always one, isn’t there.

Do you use any mobility aids such as a wheelchair or walking stick?

Just prior to turning forty, the age I was told twenty five years earlier that I would be totally blind, I had a little bit of a breakdown and panic attack. Like, oh my goodness, I am turning forty this year and I am not even ready to be blind! I became depressed, even suicidal for a brief moment. Even though I didn’t yet need it, I undertook white cane training, just because. Just to be ready. With that, I had to overcome the psychological hurdle of openly being seen as someone with a visual impairment when up until then, no one knew.
I then did turn forty, I had my cane technique perfected. And in my bag the cane stayed. My remaining sight didn’t suddenly disappear on the eve of my fortieth birthday, and I woke on my birthday relieved that I had not spent the last twenty five years dreading that day, but had done the right thing just by getting on with life. I didn’t take life for granted, and I went off to see the world while I could, but getting on with life meant I didn’t wallow in sadness. The cane training was not a complete waste of time. I know I can use it if desperately needed. But four years on, I still don’t use it at all. Soon. One day soon, it will be desperately needed. But until then, I will hang onto my last sense of independence (and my sense of invisibility) for as long as possible.
If you could extinguish your disability, would you? – If not, please explain why.
It may sound crazy to someone who is not hearing impaired, or not vision impaired, or not, like unlucky me, both, but I would not. This is all I know. I don’t know what it is like to not be hearing impaired, to not be vision impaired. This comes to me often in my writing. I cannot imagine how to write a character who is without these disabilities, because I have no knowledge or experience, of what it is like, to refer to.
Simply put. Without my disabilities, I would not be me. And to be honest, without my disabilities, I don’t know that I would like me. I would not have my empathy, I would not have my compassion. I would not have my determination and perseverance. Without my struggles, I don’t think I would truly appreciate what I do have.
No. I am just fine the way I am, thank you.
Oh, hang on, I just noted that the question was ‘extinguish’.
Yes! Yes! Yes! A miracle cure, now, would be wonderful. I could be just the way I am, just newly improved! Yes. A miracle cure that could extinguish the disabilities. For me, and for all the others like me.

For those who do not know much about your disability how does it affect your mobility?

With my night blindness, in the dark, I am totally blind. That said, I am so good at moving around familiar spaces in the dark. Better than those with good night vision, sometimes. I know how to guide myself with touch. As long as nothing is moved without my knowledge. Or that the bathroom door is not left shut when it is normally left open. BANG! Sorry family! Sorry for waking you with that loud bang. Just my whole body walking into a door. Go back to sleep now.
With my tunnel-like vision, I think I can see just fine, if it is just me. Throw me in the middle of a crowd, it is like constantly getting a fright. When I do notice those around me, it is when they are right in close. It’s like, where the hell did you come from, over and over. Sometimes, I think I am walking along alone, and I catch a scent in the air, and turn to see I had just walked pass someone I had not even noticed.

Do you think your disability has made you who you are today?

It certainly has. Although I do not think it myself, remember, this is my normal, I don’t feel special, I am aware that I do seem special to others. I know I inspire, I know I amaze. I know I achieve far more than was expected of me. My mother was told not to expect me to finish school. Not to expect me to amount to anything much at all. Well, I finished school. I finished university. I have had a successful graphic design career, working both in Australia and in the United Kingdom. I have travel extensively. I have a beautiful family. If that is not amounting to anything at all, what is?
Along the way, I have had many, many battles. Battles against perceptions. Battles against expectations. Battles against mentality. And I know I will have many battles ahead.
But my disability has made me incredibly strong. And resilient. And I know I will get through those battles ahead. But that doesn’t mean I don’t dread them.
Meanwhile, I am very aware that so many like me are also facing battles. Battles against perceptions. Battles against expectations. Battles against mentality. And they may not be quite as strong. Or they may not be heard. So for them, I write. I write my thoughts, I write my experiences, I write my frustrations. And hopefully, my words can help them through too.
What piece of advice would you give to someone newly diagnosed? Or going through a deterioration in vision / or mobility?
I am at a stage of acceptance where I just think, it’s no big deal, that’s life. Shit happens. You win some, you lose some. Get over it. I am very aware that the newly diagnosed would absolutely not share these views so I know I have to be careful what I say.
But I have not always been in this place of acceptance. I have spent many years grieving. And for me, grieving meant avoiding. Once upon a time, my coping strategy was to work really hard, save, then quit my job (something I was able to do as a successful freelance graphic designer as I kept being rehired by the same firms) and I would pack my back pack, a tent and guidebook, and fly far, far away from anyone who knew me. I would then travel alone for months, loving that everyone I met didn’t know anything about me.
My advice would be, don’t do what I did. You can run … and, well, you know the rest. It caught up with me, in a dangerous way, just before I turned forty.
Talk, talk, talk. Whinge and cry. Be angry. Be honest. Then let go.
Truly. Having Usher syndrome seems like the end. But I am going to shatter that perception. It’s no big deal, that’s life. Shit happens. You win some, you lose some.
Talk, talk, talk. Whinge and cry. Be angry. Be honest. Get over it. Then let go.
Oh, hang on. I wasn’t going to say that, was I.

Any advice you’d like to give to a person with sight / no disabilities?

Simply, see me as me. See through the disability. In fact, I would send you straight over to my blog to read a little something I wrote. Go on.
http://www.fromkatietokate.com/see-me-as-me/
Did you read it? You didn’t read it, did you? Well, it goes something like this.
Something doesn’t work properly in my ears.
Something doesn’t work properly in my eyes.
That’s all.
That’s it.
Usher syndrome is such a minor part of who I am.
But Usher syndrome is not who I am.
I am ‘me’.

Did you seek out any specialist services / charities to help you and your family deal with your situation?
When I was diagnosed, honestly, I was told, ‘you are going blind, you will be blind by the time you are forty, come back in ten years, and we will see how that is going.’ Honestly? Yeah. Let’s get together and have a chat. In ten years! No wonder I was an emotional mess.
Fortunately these days, there is so much more support around.
Where can people find you out in the world?

You can find my words on my personal blog, From Katie to Kate (http://www.fromkatietokate.com) or on the Usher Coalition blog (http://www.usher-syndrome.org).
I am Kate Elizabeth on Twitter (@_kateeliz) so please come and say hello.
Anything you’d like to add my lovely?
Oh, enough about me! Thank you for having me, Sassy!




Wow Kate, thank you so much for sharing your story! You are truly fascinating and I love that embrace life with humour and honesty! I am so grateful you shared your story with us, not only have I learned something new, but I hope that your strength and charisma proves that life really is what you make it! 🙂

Please don’t forget to follow her links, and why not share the love? Leave her a comment, we would both appreciate it!

If you, or anyone you know, would like to take part in my Campaign, do not hesitate to contact me on the following:
Email:SassysWorld6@gmail.com
Twitter
Facebook

If you enjoyed this interview why not check out the others in the series so far?
Interview 1
Interview 2
Interview 3
Interview 4
Interview 5
Interview 6
Interview 7
Interview 8




Happy Diaries #11

Hello Diary!

So last week it was announced that I made finalist for the BiBs which i’m still reeling about!!
And for the most part this week i’ve still been riding on a high because of it! 🙂 I still can’t believe that I was chosen as a finalist, it’s pretty crazy!
Super happy to all the girls who also made finalist! It’s such an honour to be here with you!

My best friend Ellie came to stay for a few nights, and that was lovely, we got excited together about the #BML16 conference, and she even help me pick out a pretty dress for the occasion! 🙂

I managed to bag myself a review, for a very well known brand… but I don’t want to spoil the surprise until it goes live 🙂

I also have some other blogging excitement on the cards, but again until it’s gone live, I don’t want to jinx myself 🙂
I’ve got a few more people on board for my #DisabilityQ&A and my other Campaigns, so look forward to reading those in the upcoming future 🙂

Gary and I have just gotten back from a lovely walk in the beautiful sunshine! It’s so nice to spend time together out in the sun and hear lots of families out enjoying it too 🙂

Gratitude List:

Being voted as a BiBs finalist!
* Spending quality time with Ellie, as well as much needed girly time; face masks and all!
* Being out in the sunshine soaking up the rays
* Blogging opportunities; whether that be guest posting for others, or having people on board with my campaigns 🙂
* Less than 7 weeks to go until my best friend gets married!!!
All in all a productive week as well as enjoying personal time with friends 🙂

I hope the sun is shining where you are!




Until next time,
Much love x