Got a question about disabilities? I have answers

by Lady Lee 99 Replies latest jw friends

  • Lady Lee
    Lady Lee

    As many of you know I suffer from a few disabilities. I also worked for many years with people with a wide range of disabilities including deaf and hard of hearing, visually impaired and blind, mobility impairments (use crutches, walkers, scooters or wheelchairs).

    Having been on two sides of a disability I know a lot of people are confused.

    Here is something from my life that I experience regularly

    I'm in a wheelchair now and although I don't use it in the house I do use it to go out. But if my daughter is coming to pick me up in her car I might take my walker down to the car or maybe just a cane. And recently I got a bike so now the people in the building are totally confused. They don't understand that "Can't walk far" doesn't mean can't walk at all. I get the same thing in the store. People see me stand up and some get angry thinking I am just milking this. I wish

    People wear glasses. We don't all have the same prescription. And even though we wear glasses most of us would say we are not blind. We CAN see. There are many causes of vision loss and everyone needs to be assessed properly by a vision specialist.

    Deafness is the same thing. Some people hear nothing. Some hear a bit. Some hear a lot. There are many causes of hearing loss. Like glasses hearing aids come in prescriptions. Hearing loss needs to be assessed by a hearing specialist.

    People with mobility problems are the same. My neighbor is paralyzed from just above the waist down. He cannot walk at all. I on the other hand am quite mobile in the apartment. I sit as much as I can because I can't be on my feet very long. I use a stool if I have to be at the sink or stove for longer than 5-10 minutes at a time. The causes of mobility impairments are staggering. It too needs to be assessed by medical specialists.

    People just need to be educated. Like dogs. I meet a lot of people with their dogs. Some dogs are curious about the chair. Some are scared and some could care less. They just need to be educated. So I stop and do some doggy education.

    Now here is a funny story. I drove into a pet shop the other day and was looking at the geckos in one of the aquariums. Cute little fellows. One aquarium had two. One of them was totally bored with me. But the other one was freaking out at the huge moving back chair outside his window. I felt bad for him and tried some of my animal education but he just wasn't interested at all and finally went to hide where he couldn't be seen although I did notice he could see me when I had to pass the tank again. Poor thing.

    People education. Doggy education. Now I am doing gecko education lol

    So here is an opportunity to ask your questions. If you feel too shy to ask a question PM me and I will post your question (without your name of course)

    There may be others here with disabilities who can answer your questions too. I welcome them to join in with responses of even with questions about other disabilities.

  • StAnn
    StAnn

    Lady Lee, I have a severe case of Fibromyalgia, along with type 1 diabetes and rheumatoid arthritis. One of the comments I get sick of hearing is, "But you look so good." If my disability isn't completely visible, it must not exist, right?

    I get some of the same nasty looks at the grocery when I use the electric scooter. People don't understand that I can walk but I can't always walk very far. I've literally had to be carried out of Kroger and carried to my car because I got stuck back at the meat counter and couldn't walk another step. Literally.

    This week my husband and I decided to take our children to a theme park. We rode the rollercoasters and all of the family rides too and everyone really enjoyed it. My husband knew that we had to plan for me to be unable to do anything much for the next week or so while I recover from the trip to the amusement park. I've been lying around on the couch a lot but it meant so much to the boys to get to go to Kings Island that we feel it's worth it for them to be stuck with canned ravioli for lunch and cold cereal for breakfast for a few days.

    My point is, when you live with chronic illness, you have to work your life around your illness. Some people may think that I'm malingering because I've been lying around in horrific pain for three days when I was perfectly able to go to Kings Island and ride the rides and walk on Tuesday. However, people don't realize that the entire day at Kings Island was very painful for me and that it was a SACRIFICE I made so that we could do something as a normal family. And for us, the entire day was only five hours. The park is open for 12 hours a day but five hours was my absolute maximum.

    So just because you see someone who is able to do a normal activity one day does not mean that they aren't disabled. They've just made a huge effort on that one day, an effort they can't sustain, so that they and their family can participate in activities most families do without a second thought.

    I hope this makes sense. What I'm trying to say is, don't be quick to judge people with disabilities. You really don't know a person's situation until you're in their shoes.

  • Darth plaugeis
    Darth plaugeis

    Lady lee I got one for you....

    I know this lady who is 97 yrs young.... she uses a hearing aid and needs it very loud but when she does this it is feeding back some very loud high pitched sound I can hear from the next room.

    That can't be good for her ................. right?

    I work around her house and this has happened for yrs... I think she can't hear that howling sound

  • Lady Lee
    Lady Lee

    StAnn

    I hear you. Those days when I use my walker - I pay for that dearly for the next 2-3 days of extreme pain. Yes I can sometimes do it. But the proce is very high and not one I always want to pay. Life is a balancing act. Do something now and suffer later or not do it.

    No people don't always understand which is why I thought this thread would be a good idea.

    Darth

    I suspect she hasn't had new hearing aids in a very long time. The new ones rarely squeal. A part of the problem is the old molds that used to be used in hearing aids. They were meant to fit snugly into the ear canal. But when you turn your head it can allow air to enter behind the aid and that can cause the squeal. And no it is probably damaging whatever is left of her hearing

  • White Dove
    White Dove

    This evening Egg and I took my hearing puppy (very large puppy) to a sushi lounge. It was happy hour and on Fridays is very packed. We asked for room for 3 at a table in a specific spot to accomodate the dog as that is the only area that she would be comfortable in (high bar chairs make it difficult to impossible to control a puppy in training and also the rock floor is loud and startling to a puppy). They said it would be about an hour wait and that it would be no problem. We said that is fine.

    We came back and were told that it was very busy and because of the dog, we would have to sit outside in the patio area.

    I'm not a fan of crowded restaurants, but we were told one thing and then offered a different thing, which would not have been comfortable for the dog or us in the 100+ degree weather.

    There was no alternative offered to us, like "I'm sorry but the area you requested is still full. Would you mind sitting on the patio or would you like to wait a little more?

    I was offended that they said "because of the dog" when legally the dog is an extension of me and only takes up the room of another person.

    What if it was 3 people instead of 2 people and one dog?

    I suspect that if it was 3 people we would have been seated where we requested.

    Granted, we didn't make reservations, but we were willing to wait an hour, just not for nothing.

  • wasblind
    wasblind

    Darth, if her feed back is of a high pitch, and she has lossed the sensitivity to this particular pitch she probably can't hear the feed back

  • wasblind
    wasblind

    " people don't realize that the entire day at Kings Island was very painful for me and that it was a SACRIFICE I made so that we could do something as a normal family."

    StAnn, i applaud the love you have shown your family,

    I have a friend who is only 45 years old, and has rhumatoid arthritis in her hip

    her husband doesn't help out concerning school activites for their son, even in pain

    she drags herself to his ball games. She walks with a cane now, it's really hard on her

    during football season on cold nights.

  • Lady Lee
    Lady Lee

    White Dove

    They needed to be reminded of the laws about service animals. You might want to talk to the manager now so that this doesn't happen in the future to you or someone else.

  • cult classic
    cult classic

    This is a good thread. I have a few questions.

    Did your disabilities come on all at once? Or was it one at a time? Have they increased in severity? Is there a chance they will regress (is that the right word?) May I ask what caused your disabilities?

    One of my great aunts and one of my grandfathers had mobility issues before they died. They were in their late 80s. They didn't use a chair. So they took forever to get from point a to point b. I can laugh at it now.

  • cult classic
    cult classic

    StAnn - With fibromyalgia does your whole body hurt? Or is it a fatigue issue? What are the chances you'll recover? Is there any way to prevent getting it?

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