I’ve been registered blind since birth AMA

[JPWG2450]

Inspired by a recent goady thread about disability benefits

i was born at 27 weeks
And as a result am registered blind.
I do claim disability benefits

AMA, in an effort to educate people more on what living with various disabilities is really like

[Asher33]

Can you see anything at all?

(for anyone not aware, 93% of people registered blind can see something)

[JPWG2450]

@Asher33
i can
i am completely blind in my left eye, and can’t perceive light.
My right eye was 3/60 when I was born
its deteriorated to 0.6/60 now

[Saltywalruss]

How do you access the internet?

[JPWG2450]

@Saltywalruss it varies
for things like mumsnet I have an iPhone and I use large text and zoom

For larger blocks of text or detailed images I have a 32” tv hooked up to a MacBook, and sit really close.

I have a screw reader installed, and can use voiceover on my phone if needed but I do try to avoid this as I like to use my remaining sight as much as possible

[RedRosie]

Hello. Are you/have you been able to work? I have a colleague who has been profoundly blind from birth, and who holds down a senior role involving both a regular commute into central London and other work-related travel. I'm sure this is unusual though, and can't imagine how hard it is.

[JPWG2450]

@RedRosie

Unfortunately I have not been able to work, although this is due more to my social anxiety than my eyesight.

I am however well educated (degree level), and I do volunteer.
I’ve found the biggest challenge with volunteering, and I can only imagine the issue would be tenfold for a paid position
is that many people simply don’t give you a chance. They see ‘blind’ and they assume you are incapable.

I’ve volunteered for an organisation for four years now working with young people in foster care. Absolutely no issues in doing so.

When I had my six monthly supervision meeting my supervisor confided in me that when she saw my application she didn’t think I would be able to do the job, but she interviewed me, and I changed her mind.
The issue is, often you don’t get to the interview stage

I would also add that when I left school at 16 and presented myself at the job centre to look for work, the trained disability advisor literally said ‘you’ll never work here’s a benefit form’

That was back in the good old days of incapacity benefit when disabled people were written off for life. Then ESA was introduced and I had to fight tooth and nail to claim essentially the same benefit for the same medical conditions

[Hillrunning]

Thank you for sharing. What do you mean when you say you can't perceive light?

[flatterthanever]

do you have a partner / family - what is your living situation?

i hope life is not as hard for you as it
might be perceived to those of us who are not blind. It’s great that you share your experience

[AWayOut]

@Hillrunning

Sorry, sometimes I forget that a lot of medical terms I’ve heard all my life mean nothing to others.

Some blind people have ‘light perception
So while they have no vision at all, they would know if someone were to turn a light on, or if it were bright outside.
Similar to how when you close your eyes in the dark, you see blackness
but when you close your eyes in the light it’s a lighter colour

i have no light perception in my blind eye, so I see blackness regardless of the light in the room

[RedRosie]

@JPWG2450 Although I know my colleague quite well, it's mostly in a professional context and I wouldn't ask personal questions (she's a bit scary, but I suspect she has had to be very tough). I cannot imagine the additional hurdles that people with disabilities have to go through to lead a working life, and even as you say, to have the opportunity to do so. I hope you have friends/family and a social life - I know social anxiety must be another disability for those that have it.

[mumofnations]

I have 4 DC, 2 who are albinos 1 registered severely sight impaired the other sight impaired......as there mum I wish a doctor could show my on a screen how they see as trying to explain to people they are registered sight impaired but they can see to some degree is hard.

[GrannyAchingsShepherdsHut]

It sounds like you can see big things close up? My question, if it's OK please, is do you see differently when you dream?

[ofwarren]

@GrannyAchingsShepherdsHut

It sounds like you can see big things close up? My question, if it's OK please, is do you see differently when you dream?

This is the question I wanted to ask and also, can you see images in your minds eye? Like visualisation.

[Asher33]

@mumofnations

I have 4 DC, 2 who are albinos 1 registered severely sight impaired the other sight impaired......as there mum I wish a doctor could show my on a screen how they see as trying to explain to people they are registered sight impaired but they can see to some degree is hard.

RNIB may have videos? I seem to remember (and please correct me if I'm wrong!) that those with Albinism also have Nystagmus? There's a video on YouTube of people explaining what they see. It's called "the way we see".

[Lilgamesh2]

Does being blind cause you a lot of unhappiness? It seems tough but I hope you feel content with your life.

Do you have lots of blind friends?

[JPWG2450]

@flatterthanever

I’m married, no children but that’s by choice.

My husband also has a visual impairment although it’s the first time that I’ve dated someone who also has a disability.
We rent from the local authority and have the most gorgeous house cat.

I’ve lived independently since I was 16

it can be challenging but I do think it’s probably easier than others imagine it to be.

[JPWG2450]

@mumofnations

When I was a child my Granny used to lie next to me in the bedroom and ask me to describe what I could see so she could get a better sense of what it was like for me.
it’s hard though.
I think If you had full sight and lost it you’d be in a better position to explain the difference
but when it’s all you know, it’s so tough to explain to others.
my left eye is easy, bevaiss I can’t see anything but trying to explain my right eye is quite hard.

@GrannyAchingsShepherdsHut
i’ve actually never though about it.
but I think my sight is the same in my dreams.

@ofwarren
i have a vivid imagination and can visualise well, and see things in my minds eye.
I tend to focus on details a lot. It’s strange, often I will notice things that fully sighted people don’t, and it’s simply because it’s more of an effort for me to see, so I pay closer attention to things.

[JPWG2450]

@Lilgamesh2

Sometimes I’m happy, sometimes unhappy much like anyone else, but it’s not often that the unhappiness is directly linked to my eyesight. There’s the odd thing, like wanting to go somewhere that’s really difficult to get to on public transport or takes forever but would be easy in a car, it makes me sad that I’ll never drive.

There’s been times where I’ve liked the idea of certain jobs that require a medical I wouldn’t pass, or things like watching a program and missing a massive part of the story because it’s visual
But those things are all short lived.

I imagine it’s much harder to have full sight and then lose it, in many ways I’m lucky because I don’t know what I’m missing

I have some blind friends, but just as many sighted ones.

I went to a mainstream school, but went to youth clubs for the blind, Then I went briefly to a college for the blind, on to a mainstream college and university

I’ve volunteered for guide dogs, so met lots of blind people there but then went on to volunteer for an organisation who had never had a blind employee.
So it’s always been a mix for me.
Whereas there are blind people who go to special schools, special colleges, and special clubs all their lives and don’t have much interaction with sighted peers and their friends will predominantly also be blind.

[RaininSummer]

Thank you for your thread it is interesting. Can I ask you what is the hardest every day type activity for you to undertake?

[ohforthelife]

Have you got a guide dog?

[JPWG2450]

@ohforthelife
i don’t, I have thought about it a lot, and did apply in the past, I did the training but I’m very independent and found it more difficult getting around with a guide dog than I do without.

@RaininSummer
The hardest everyday thing on a practical level is probably cooking.

But emotionally, it’s getting the balance between being treated just like everybody else, and allowing people to help.

I find that when people meet me, they’re often unaware of my sight, and when they find out they tend to overcompensate and almost treat me like a child, and that tends to make me less likely to ask for support when I need it.

[BathTangle]

When you go to a restaurant, what actions do you find most helpful for the staff to take? We are planning to take FIL to a top restaurant for his birthday but his sight has recently deteriorated and he is very worried about it. I am sure the restaurant will do all they can to assist, but it would be helpful to think of things in advance.
I do appreciate everyone will have different views but any suggestions we should consider would be very welcome.
Thank you

[Buteverythingsfine]

Very interesting thread, thanks OP! Do you fancy your husband and in what ways (if you can't see him)? Just being nosy!

[Guidedogowner]

I have also been registered blind since birth. I have 0 sight at all, and I have a guide dog

only 1 in 10 people who are severely sight impaired are working.


This documentary
gives a bit of an insight into the struggles faced by the visually impaired looking for work.

[Brokendaughter]

I am losing my sight & finding some parts of it really hard - mostly the way other people treat me as it becomes more obvious.

Do you have problems with people abusing your lack of sight as a woman?

I had a workman flash me in my own home a couple of weeks back, after he realised I couldn't see well enough to be 100% clear on what was happening right in front of me - I just saw a fuzzy skin coloured smear that had been trouser colour before & wasn't entirely sure what had happened until after he was gone.

My security camera however has no problem seeing what is going on & he hadn't noticed it so I know I didn't imagine it.
It didn't catch him at an angle you can see everything, but it shows him undoing his trousers & dropping them with his undies clearly enough you can be sure of what he did.
Without that camera, I would still be doubting it happened because I sort of still can't believe it happened.

I found it really shook my faith in people, to have someone treat me that way because they thought they'd get away with it.
A couple of years ago he wouldn't have tried it as my vision was better.
It made me feel really vulnerable in a way I never have before.