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Living with disability

Discussion in 'Health and Aging' started by Seeler, Feb 7, 2015.

  1. Seeler

    Seeler Well-Known Member

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    I don't have the stats, but from my own observances I can imagine some of the problems people face when living with disability.

    Many of them seem to live in poverty - a large percentage of the people who come to the church where I volunteer have health problems severe enough that they are unable to work.
    At the same time their expenses may be higher
    They may need aids for mobility, for reaching, for personal care (a friend with Parkinsons has support bars installed all around his home so he can reach from one to another to get from the bed to the bathroom, livingroom, kitchen)
    They may need a personal attendant for a few hours or full time
    Buildings that should be accessible are not always so - ramps are poorly designed or placed, or not cleaned off after storms. Doors are hard to open. Elevators are not always available. Not enough bathrooms have hand rails to assist with support. (I ran into this problem at our newly built Y when a woman in a wheelchair reprimanded me for using the only handicapped shower stall.)
    They may need a three-wheeled bicycle for recreation or transportation

    There are probably ways that other people can be sensitive to their needs, comfort, and happiness - like talking to them directly rather than to their companion (this happens with old people too); or sitting down to talk to a person in a wheelchair so that she doesn't have to look up all the time. Being patient when they require a little extra time. Holding doors. Including them in conversations, inviting them to events, offering transportation, carrying a bowl of soup (a big help to me at church luncheons). Asking their opinion. Asking for their help. (A blind man has recently taken over one of the positions on our church council.)

    This is a thread for people to share what it is like to live with disability and how others can help - including advocacy. (My church is pushing for better public transportation in this city - perhaps because one person living with a disability keeps bringing it to our attention.)
     
    Carolla likes this.
  2. ChemGal

    ChemGal One with keen eye

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    Believe them.
     
  3. Jae

    Jae Well-Known Member

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    Thank you for posting this thread Seeler.

    As relates to my epilepsy...

    I do have to spend some extra money each month to buy a medicine called Epival. Thankfully 90% of that cost is covered by my work benefits.

    The medicine has some side-effects like making me drowsier than most - and it led to weight-gain. The former side-effect has made it a bit harder for me to study.

    My case of epilepsy is a mild one - but at least once every couple of months I will have a "petit mal" seizure in which I become dizzy for a few seconds. For this reason - and because I choose to be honest about it - I am unable to obtain a driver's license.

    A couple of times a year I will have a "grand mal" seizure. For me - these occur when I am rousing from sleep. Heat seems to be a trigger - so they have usually occurred in the summertime.

    How others can help? Personally - when I've had "petit mal" seizures - I've been able to communicate with other people present and request whatever help I've needed - such as assistance in sitting down.

    If you should see someone like me having a "grand mal" seizure - the one in which the person is out of it and shaking - please protect their head from being damaged. Also - never put something in the person's mouth in fear that they're going to swallow their tongue.
     
  4. ChemGal

    ChemGal One with keen eye

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    Having a ride home from my training appointments would have been nice. I couldn't try the ativan I was prescribed specifically for that purpose, as I had no ride home.
     
    Justme likes this.
  5. ChemGal

    ChemGal One with keen eye

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    Thinking about this more, I think awareness is a huge thing.
    Having a diagnosis helps - it allows one to know what's a serious problem, find ways to prevent problems, and to make things easier. It makes it easier to obtain supports. In order to get that a doctor needs to know the condition exists in the first place.
    Awareness means people know what to do, and makes it more understandable. Someone having a seizure, or swelling up, or shaking isn't possessed by the devil, they haven't been cursed. When people understand it's a medical issue there's less fear and stigma.
     
    Justme likes this.
  6. You just never know

    You just never know Blip, blip, blip....

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    Our Church was built in 1912 and was not accessible. We recently installed a wheelchair lift and two accessible washrooms so all would be welcomed on equal terms.
     
    Carolla and Jae like this.
  7. Jae

    Jae Well-Known Member

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    Nice. Our church is about 70 years old and a few years ago we installed a lift and made 50% of the washrooms accessible ♿.
     
  8. Kimmio

    Kimmio Fun with app art

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    I think a diagnoses helps a person manage their own impairment with informed decisions but I don't believe it is everyone's business or a calling card. It can be very invasive to have others assume they should know "what you have". Nobody who is "normal" has to talk about intimate details about their health check ups or treatment plans with everyone just to get help from time to time or be taken seriously - only to then be excluded by attitudes about it. That's why it can be discriminatory and a form of ableism. Next time someone asks you to explain a visible aspect of disability - try asking them about their health history! And then maybe you will see why it can be oppressive.

    At one time I worked for an advocacy organization, and at that place it was customary for everyone to say "So, what's your disability?" because everyone had one - from spinabifida, MS, to CP, to depression to fibromyalgia and many more. It was the nature of the place to be open - their credo - and I appreciated it because it made us "equals" in that sense - whether the impairment was visible or not. But, the point was even more that we all have something - and if we don't at present, we will! And that recognition is essential in the struggle for equality because it is unjust that people with impairments are more prone to discrimination at jobs, and everywhere. When the ideal we are "supposed" to meet as humans is elusive and inconsistent throughout life. And often attitudes hurt more and do more lasting harm than impairments themselves. Especially when they become systemic in groups and workplaces and churches and institutions.

    So, in the 'real world' I don't go around discussing my disability unless someone sincerely asks me about it. I don't offer it. I hate that employers think it's their right to know anything about your diagnoses and treatment. All they should need is "these are recommendations for accommodation" by somebody other than a doctor if the doctor clearly hasn't got a clue about daily life challenges. I think people should have the right to seek and provide advice from others besides doctors for support.
     
  9. Kimmio

    Kimmio Fun with app art

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    That is true but that the system is set up like that for supporting basic human needs, is ableist.
     
  10. ChemGal

    ChemGal One with keen eye

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    When it is set up like what? For getting appropriate treatment?
     
    Northwind likes this.
  11. Kimmio

    Kimmio Fun with app art

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    I don't feel I should have to explain my disability as per labels as much as we're asked to anymore than I to have mention to everyone I meet that I'm a white woman - just to have basic supports. My error was being born - which is not an error - is how I feel about that expectation. It is unfair.
     
  12. Kimmio

    Kimmio Fun with app art

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    Doctors are not the only arbiters of needs all the time. With CP - lately I have mobility decline but it basically is what it is and I don't feel I should need to go to the doctor every five minutes to fill out some support forms. As a consequence of my personal protest I receive few supports that might actually help me - but it really sticks in my craw how dominant the medical profession is and the assumption that we should be fixed to as close to a mainstream norm as possible. Instead of accepted and equal as we are.
     
  13. ChemGal

    ChemGal One with keen eye

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    Not sure why you're replying to my quote that way.
     
  14. Kimmio

    Kimmio Fun with app art

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    To get supports it helps to have a diagnoses, you said. I agree. But to get a discount on the ferry to visit parents - I need a doctor's note. For a bus pass I must get a doctor's assessment and qualify for social assistance - I don't have that currently. No doctor's assessment, no help. I have had CP my whole life but I have to justify it everytime I need help. I feel like I have to justify my basic existence to people who don't know me, frequently..
     
  15. ChemGal

    ChemGal One with keen eye

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    I still don't know why you quoted my post as you did.
     
  16. Kimmio

    Kimmio Fun with app art

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    Just explaining why the system is ableist.
     
  17. Kimmio

    Kimmio Fun with app art

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    I don't drive, we don't have a car, and there are days when my anxiety is high and/ because my muscles are too stiff to feel safe walking out alone - getting to the bus stop, on the bus, transfer to the train - in the rain with cane and umbrella. Walking anywhere after dark when I can't see as well where I'm stepping. If it snows or the ground freezes (so far so good) I'm hooped. It's overwhelming. There are days I don't go out because of that. I cancel work or plans. Then I feel guilty and depressed. I am working on that with a doctor now - and others- to overcome this. I wasn't always this dependent (and I feel shame about that - some say I should some say I shouldn't but somebody's always got an opinion and they often contradict) but I just need extra help for a little while or maybe I need to learn to adapt. Either way. There are things called taxi-savers. Discounts tickets for half price cab fare. You need to have a disability or be a senior and in the case of the former, a doctors form filled out to get them. I don't have that. I know about all these things but hate accessing them for myself because it just feels like a violation of my person and a shame to have to justify help leaving the house and going somewhere necessary - or other things that are necessary.
     
    Last edited: Feb 8, 2015
  18. Kimmio

    Kimmio Fun with app art

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    By the way, all that seniors need for many supports and discounts is proof of age. Not that they shouldn't have help but the process is not entirely fair. When I am 65 I won't have all these hoops to get similar supports. It is oppressive.
     
  19. Kimmio

    Kimmio Fun with app art

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    I would say advocate for more streamlined, less cumbersome, less invasive and less ableist systems for support. If someone obviously might need a hand give them one if they ask. They shouldn't have to justify needing to live and have a life like everyone else.

    Help people anyway. What kind of society do we live in anyway?

    When building a structure or a program keep common challenges in mind. Be more flexible about customs and routines and protocols.
     
  20. Kimmio

    Kimmio Fun with app art

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    And remember people with disabilities are just people.

    Don't be afraid to say to a person who uses a wheelchair "let's go for a walk" or say to a person who is blind/ visually impaired "I see what you mean". A person with a disability is not an inspiration because they have a job or a parter or kids or whatever...it means they're human.
     

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