Visual and hearing impairments
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how does having a visual impairment affects us al?

11190821119082 Posts: 258 Member
Visual Impairments and Hearing impairments have affected us all during the current lockdown.

Replies

  • 11190821119082 Posts: 258 Member
    edited February 8
    I would really like to talk about how the current lockdown has affected my visual impairment. 
  • 11190821119082 Posts: 258 Member
    My visual impairment has  affected me to be friends with other people and I want to be able to improve this in the future.
    I have been bullied before due to the fact I have got a visual impairment such as it is a sensory condition instead of a medical condition that affects only 5 percent of my vision. Nystagmus does affect 1- in  5 people worldwide. 
  • janer1967janer1967 Member Posts: 11,199 Disability Gamechanger
    Hi and welcome 

    Feel free to join in or ask any questions and talk about your concerns with your vision 

    We do have a visual impaired section on here 

    I am too visually impaired and had to have emergency treatment in lockdown and still having monthly treatment now 


  • 11190821119082 Posts: 258 Member
    Feeling like others would not understand us all. Or be friends with me or others with special needs. 
  • 11190821119082 Posts: 258 Member
    and others doing cyber bullying affects us all.
  • 11190821119082 Posts: 258 Member
    If I can do open up about  my visual impairments then I do think others should do too.

  • lisathomas50lisathomas50 Posts: 4,338 Disability Gamechanger
    @1119082 hi welcome to the community how are you today 
    .
    I had a temporary visual impairment  due to cataracts in both eyes it was the worst thing that had ever happened  ti me I couldn't drive I lost my job  I realy struggled  due to corona virus my surgery kept getting cancelled   but I have now had one eye operated on so now I have now been able to drive again and read and everything  I couldnt do 

    So I understand hard hard it is and people don't always understand I am sorry if people haven't spoken to you 

    Hope that your ok and hope that you will be able to get the help abd advice you need 😊 
  • 11190821119082 Posts: 258 Member
  • 11190821119082 Posts: 258 Member
    Actually I understand that other people may not understand that I have got a visual impairment other people make fun of me. 
  • 11190821119082 Posts: 258 Member
  • 11190821119082 Posts: 258 Member
    My 6 months appointments have been cancelled all of the time due to fact there is the current pandemic happening.
  • lisathomas50lisathomas50 Posts: 4,338 Disability Gamechanger
    @1119082 people shouldn't make fun of you  do you have any help or support 
  • 11190821119082 Posts: 258 Member
    Showing that I do have a caring nature of others who have gone through difficulties' 
  • 11190821119082 Posts: 258 Member
    edited February 8
    Hi Lisa, 
    My name is Masuma I  would like to be your friend like a talking buddy 
  • lisathomas50lisathomas50 Posts: 4,338 Disability Gamechanger
    I had alot of my appointments  cancelled  but I  eventually  had my operation  just before this current lockdown 
  • 11190821119082 Posts: 258 Member
    This may be the very first step and I do think that me and you both could help others from not feeling that overwhelmed. 
  • lisathomas50lisathomas50 Posts: 4,338 Disability Gamechanger
    What is the problem with your eyes can they be rectified  so that you will be able to see better 
  • lisathomas50lisathomas50 Posts: 4,338 Disability Gamechanger
    I eill help you the best I can 
  • 11190821119082 Posts: 258 Member
    edited February 7
  • lisathomas50lisathomas50 Posts: 4,338 Disability Gamechanger
    I can talk to you on here about how to help you 
  • 11190821119082 Posts: 258 Member
  • 11190821119082 Posts: 258 Member
  • lisathomas50lisathomas50 Posts: 4,338 Disability Gamechanger
    Thsts ok what sort if help do you need or advice what  are the problems you have with your eyes 
  • emmarenshawemmarenshaw Member Posts: 712 Pioneering
    Welcome to the community @1119082
  • 11190821119082 Posts: 258 Member
  • Adrian_ScopeAdrian_Scope Testing team Posts: 8,001

    Scope community team

    Hi @1119082
    I don't have a visual or hearing impairment but it wouldn't stop me being friends with someone that does. I am sorry to hear you've faced cyber bullying and people making fun of you. 

    Are you getting on okay with doing college work at home?
    Community Manager
    Scope
  • Ross_ScopeRoss_Scope Posts: 4,131

    Scope community team

    Hello @1119082

    Welcome to the community, hope you're well.

    I'm sorry to hear you've been bullied for having a visual impairment, that must have been difficult to handle. 

    We have many visual impaired members on the community, myself included, so I'm sure you'll meet people with shared experiences. 

    You mentioned in your opening post about the lockdown, I'd love to hear how it has impacted your visual impairment if you want to talk about it :) 
    Online Community Coordinator

    Talk to our chatbot and give us feedback on the community.
  • MasumaMasuma Member Posts: 31 Listener
    No my visual impairment I have been born with it 
  • MasumaMasuma Member Posts: 31 Listener
    My visual impairment has got no cure 
  • Ross_ScopeRoss_Scope Posts: 4,131

    Scope community team

    I'm sorry to hear it can't be cured @Masuma, you never know though one day there might be one. 

    Is there a particular aspect of lockdown that is causing you stress with your visual impairment?
    Online Community Coordinator

    Talk to our chatbot and give us feedback on the community.
  • mikehughescqmikehughescq Member Posts: 6,615 Disability Gamechanger
    I’m going to be controversial here and suggest that the figures on the numbers impacted by Nystagmus are, at best, debatable and a find illustration of some delicate issues. 

    The estimate for many years was 1 in 4,000. That made it a rare disease. That’s great and interesting but rare diseases don’t tend to attract much research money. The figure became 1 in 1,000. How did that happen? 

    The research which led to that figure was done by 1 hospital which runs a specialist clinic and was based on their catchment area. Many people use that clinic from well out of area and at one point people were even moving to be close to that hospital. Not exactly an unbiased sample. 

    Now the figure has come down again. It’s no longer a rare disease but it can certainly attract a little more research money. The basis for the new figures? A sample size which again appears to be small and have holes in the methodology. 

    I say all the above as someone with Nystagmus. I quite liked it being rare. I definitely like it being researched. My scientific brain is not so stupid as to not realise when data is being used in a way which at the very least begs more questions and should not be accepted at face value. Even on an anecdotal instinctive level it should be very obvious that 1 in 5 of the people you know clearly do not have Nystagmus.
  • chiariedschiarieds Community Co-Production Group Posts: 9,160 Disability Gamechanger
    I have what was once considered a rare (genetic) disorder. When I first read about Ehlers-Danlos Syndrome 20 years ago, the incidence was 1 in 20,000, that figure subsequently came down to 1 in 10,000; currently 1 in 5,000 for the commonest type I have, tho acknowledged that this incidence is now probably also out of date. Sometimes the more is known about a disorder, the more it may be picked up on by Drs. & therefore the incidence 'appears' to decrease. However, as above, there can also be bias, which should be acknowledged.
    Both my son & I have nystagmus at the extremes of our lateral gaze, tho unlikely to be considered in the general 'nystagmus' population. However this was found as I was looking into Ehlers-Danlos Syndrome in some being associated with a neurological problem called Chiari 1 Malformation. I was fortunate to get in touch with a neurosurgeon at the Chiari Institute in New York; the world's first Chiari hospital. Not only did patients from other parts of the States go there, but also from many countries.
    They did a retrospective study of 2813 patients, & found nearly 13% of their Chiari patients also had Ehlers-Danlos Syndrome, but noted the bias. Those that had a prior 'failed' Chiari surgery went there; some of these due to having previously unrecognised Ehlers-Danlos Syndrome as they later found. As yet we don't know the true incidence of Chiari 1 Malformation in some of those with Ehlers-Danlos Syndrome.
    So, the incidence of a disorder may gradually decrease as it is better known over the years; bias may be noted & the incidence likely too high as I've mentioned, or the incidence too low, as illustrated above by 'research' that didn't seem to have acknowledged such a bias. 
  • 11190821119082 Posts: 258 Member
  • carthacartha Member Posts: 1,388 Pioneering
    1119082 said:
    My visual impairment has  affected me to be friends with other people and I want to be able to improve this in the future.
    I have been bullied before due to the fact I have got a visual impairment such as it is a sensory condition instead of a medical condition that affects only 5 percent of my vision. Nystagmus does affect 1- in  5 people worldwide. 
    You shouldn't find any bullying on Scope. I have been at the receiving end of bullying and discrimination for other reasons and know how it feels, and how it affects quality of life. It's nice to be in a place (Scope) without being judged. My problems are related to my mental health and autism but my dad has terrible eye sight, and was blind for two years after bodged operations, so I know about his struggles with things which may be similar to yours. He had detached retinas on both eyes. There is a lot which he doesn't see, especially on computer screens. I haven't been able to get him to change over to something that will read and type for him (he's super stubborn!), just like I haven't been able to convince him to get a mobility scooter so he go further on walks, etc. He sees all these aids as a step backwards rather than embracing the technology. Anyway, I'm going off topic :-)  There seems to be some good friendly people on here, and I'm sure a good number will have had some experience with bullying. Cyber bullying can seem worse because people will often say more online than in person. It would have to be an ignorant person who bullies but I have known a bully to do a complete u-turn when they have a better understanding of another person's struggles. Unfortunately that seems not too common.
  • Masuma12345678Masuma12345678 Posts: 50 Member
    Okay Scope is very helpful and I have creating more friendship groups during my time at College.
  • 11190821119082 Posts: 258 Member
  • csno01csno01 Member Posts: 208 Pioneering
    1119082 said:
    My visual impairment has  affected me to be friends with other people and I want to be able to improve this in the future.
    I have been bullied before due to the fact I have got a visual impairment such as it is a sensory condition instead of a medical condition that affects only 5 percent of my vision. Nystagmus does affect 1- in  5 people worldwide. 
    Hi There,

    Welcome to the community.

    I am sorry to hear you have experienced this. 

    I too am visually impaired and have found it difficult to judge the Socially Distancing rules. I also have Nystagmus.

    CSno01
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