Invisible Disability

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Invisible Disability
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    Community Voices

    I need a break.

    I’m tired of being upset. I’m tired of fighting for fairness. I’m tired of not giving up. I’m tired of crying. I’m tired of saying you don’t understand and I am so very very very tired of people who don’t even care to understand. #stress #Epilepsy #norespect #InvisibleDisability

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    Community Voices

    Playing The Devil's Advocate When Talking About Able-Bodied People Dressing Up As Disabled People For Halloween

    In one of my previous opinion pieces I stated that people should not dress up as a disabled person during Halloween. Sometimes people dress up as disabled historical figures and don’t even realize it (and it isn’t even their own fault to some extent). That is because some famous people with invisible disabilities have done a good job of hiding their disabilities, thus giving the illusion that they are not disabled. This is where I think we shouldn’t criticize people for dressing up as historical figures that have a disability. One rule of thumb I go by is “If this person was able to get to where they are without support programs for those with their disability, would they still be successful?”. Another rule of thumb is asking,” When can you use person-first language to describe the person and also have no descriptors change”, that is the time when it is ok to not criticize others who dress up as a historical figure with a disability for Halloween. If at least 10% of all adults have an invisible disability, you are likely to find a handful of people dressed up as historical figures with learning disabilities at any Halloween event.

    Whenever people talk about Elton John, Edward Snowden, and Julius Caesar, all epileptics, their disability is almost never mentioned in the conversations about them. One could call Greta Thunberg an activist instead of an autistic activist: since anyone can memorize the amount of CO2 a sweatshop produces. One thing people in the United States don't talk about when mentioning Greta’s rise to fame and success is that she is a “nepotism baby”, even though she attributes her success to her autism. Also Elton John’s, Edward Snowden's, and Julius Caesar's epilepsy didn't get in the way of them doing their work at the height of their careers. Almost all the people dressing up as Greta Thunberg, Julius Caesar, Elton John and Edward Snowden aren't doing so to mock disabilities. In their context, those people are dressing up as famous influencers whose achievements define them more than their disability.

    However, unlike the celebrities above, you cannot separate Helen Keller from her disability while having a conversation about her. If Helen Keller didn't have a disability she would just be known as a woman with a university degree. You also cannot separate Temple Grandin from her autism when talking about her, as her autism has played a huge role in her inventions. If Temple Grandin didn't have autism, she might have just been a veterinarian instead of someone who revolutionized the way livestock are treated and cared for.

    Another problem within the Halloween costume debate is when able-bodied people treat adaptive equipment like accessories. I've heard of stories of “emotional support peacocks” and “emotional support pigs” pooping on planes, which can lead to people questioning the legitimacy of actual guide dogs. People who need adaptive equipment to do regular tasks is another situation when a person can't separate themselves from their disability, even if they are able to hold a regular job. An example is Walter White Jr from Breaking Bad. Despite the fact that his personality has a bigger influence than his physical disability in terms of his relationships with other people, he couldn't do every day tasks without his adaptive equipment.











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    Community Voices

    ADA rights for people with invisible disabilities in healthcare

    I’m working on developing a public list of ADA accommodation ideas for invisible disabilities (eg, cognitive impairment, low vision, anxiety, etc.) in healthcare settings.

    I would love suggestions on accommodations others have been granted (eg, longer appt times, providing a note-taker or audio recording of appts, etc.)

    #ADA #InvisibleDisability #HealthEquity #tbi #migraine #Fibromyalgia #ChronicPain #Anxiety #PTSD #Depression #DisabilityPrideMonth #Dysautonomia #AutonomicDysfunction #vestibulardisorder

    8 people are talking about this
    Community Voices

    I’m new here!

    Hi, my name is autumnsassafras. I'm here because I have chronic pain caused by inflammation in my joints due to a connective tissue discorder (been speculated that it's EDS) i also have disautonomia which is pretty severe. I'm here to make friends around my age.

    #MightyTogether #InvisibleDisability #Disability

    3 people are talking about this
    Community Voices

    I might have prosopagnosia like Brad Pitt

    <p>I might have <a href="" class="tm-embed-link  tm-autolink health-map" data-id="5b23ceae00553f33fe99ae6a" data-name="prosopagnosia" title="prosopagnosia" target="_blank">prosopagnosia</a> like Brad Pitt</p>
    5 people are talking about this
    Community Voices

    Forgiveness = Freedom & Peace

    I’m sry this is a lil long. I am 52 but the baby in my fam. 3 brothers and 1 sister who passed. One of my brothers who is the only married one said they considered me more like their daughter then a sister.
    We were extremely close talked on the phone all the time sleep overs & vacations. I then got sick Lyme twice then diagnosed with fibromyalgia.
    I unfortunately was not able to work any longer. I had loved working and loved my career. My company ended up laying off 90% of my department. I was absolutely crushed. At the time I had needed back surgery and ended up getting an anterior lumbar fusion.

    When I spoke with my brother he felt that I could and should still work. He and my sister in law started saying that I should lose weight (which they had not known I has lost a considerable amount of weight)
    Then they went on to say I should stop drinking which again because I had quit smoking due to the surgery I also stopped drinking.
    They then said A LOT to me a lot of things that were out of line. They then proceeded to say the most painful thing to me.
    Which was they hoped that I wouldn’t get approved for disability. Now at the time my husband was awaiting his disability as he was hurt on the job. So financially we were struggling. (Sry so long).

    So fast forward 10 years I have been on disability and my brother and sister in law do not speak. They told my mother they do not know why we’re not speaking or why I’m mad at them. I think my biggest pet peeve of the whole thing is they said they looked at me as a daughter. Yet they never reach out. We have had a few special occassions were my daughter wanted them there, so we invited them.
    They have never invited us to anything. I don’t want to be petty and want to do the whole forgive and forget but the question is I am worthy are they worthy of my forgiveness or can as I have my own family my husband and daughter. Write them off as I feel they did me ?
    Whatcha ya guys think

    #fibromyalgia #fibrowarrior
    #fibrofighter #sickofbeingsick
    #chroniclymediseaseawareness #lymesucks #LymeWarrior #lyme
    #invisibleillness #spoonielife #chronicpainsucks #epsteinbarr
    #ra #rheumatoidarthritis #ic/BPS #interstitialcystitis #ptsd #sciatica #pituitarytumor #nervedamage #ankylosingspondylitis #LymeDisease #LymeWarrior #chronicpain #chronicpainsufferer #ddd #migraines
    #immunocompromised #forgive #familydisfunction
    #InvisibleDisability #DisabilityBenefits #anteriorlumbarfusion
    #LymeDisease #ChronicLymeDisease

    2 people are talking about this
    Community Voices

    Thoughts about my cane and being able to walk with ease again

    I have been relatively able-bodied my entire life, but recently, getting around has been.. unusually hard. I can walk short distances and I can stand on my own, but.. over time everything starts to hurt and get really, really heavy.

    I thought about getting myself a walking cane at the nearest drugstore, but it took a long time for me to even consider- was something like that not made for someone like me, who can still.. sorta walk? But after too many pained incidents, I caved and got one.

    This little thing is a blessing to me. I can actually walk a decent way without fatigue or pain from carrying the weight of my body! I'm so glad I bought one, even if it was nothing fancy.

    Maybe, reader, this is an encouragement to go out and treat yourself to an accommodation you may be withholding because you believe you're "not disabled enough". If it helps you, it helps! I can't recommend being kind to yourself in this way more, whether in mind or body.

    #Cane #DisabilityAdvocacy #DisabilityRights #InvisibleDisability

    Community Voices
    Community Voices


    I had my yearly physical this week. For the most part, things went well. I’m recovering from my second spine surgery in less than a year. I recently brought Covid home to my partner- I (think I) was asymptotic, unfortunately he is still dealing with the disease. Lucky for both of us, it’s mild though uncomfortable.

    Well, at my annual, I ask my doctor if they will write me a new script for a handicapped pass, as mine current is set to expire soon. My doctor sucks in their teeth and responds, “you know, you can walk. You’re not handicapped. I just don’t think you need it anymore.”

    Me: okay…

    Just another prime example of living with invisible illness and disabilities. I’m SO tired. I’m tired of having to justify myself- especially to doctors. I’m tired of having to prove myself, my value, or my worth. I’m tired of fighting to prove I’m disabled when I’ve been living with Fibromyalgia and other chronic disease and pain for almost 3 decades. Then to get slapped in the face with this by my GP? Ffs. #InvisibleDisability

    2 people are talking about this
    Community Voices