When My Disability Is Invisible

A blog post for Blogging Against Disablism Day 2009

“I am still disabled when my disability is invisible” – a digital artwork.

when my disability is invisible

Just because my disabilities are not obvious because you can’t see a wheelchair, a cane or stick – doesn’t mean I don’t need your understanding.

I don’t expect you to be a mind reader but when I tell you I have a problem with something you have to trust me that I know what I’m talking about.

Everybodys TalkinIf I ask you to email me because talking on the phone is difficult I’m not trying to be awkward.  You need to look at your organisational practices because with my illness sometimes asking me to answer lots of questions over the phone is like asking me to walk around the block when I am bedridden.

If I tell you I need you to speak slowly and be patient I’m not being difficult.  I need time to process what you’re saying and think about responses. I have neurological symptoms which can affect comprehension, speech and memory.  Just because I can talk normally at the start of our conversation doesn’t mean the effort won’t leave me speechless, exhausted and confused by the end of it.  You’re going to have to trust me – I know what my disability is like.

VacantDon’t assume that because I look well and capable, that I am, especially when I tell you I am not.  If I meet you and you can’t detect my disabilties it’s because I manage my condition very carefully so I am not in constant pain, utter exhaustion and struggling with neurological problems like memory loss and communication.  If you push me these will be apparent – maybe while I’m with you or maybe once you’ve gone.  I’m not eccentric, I’m not crazy, I’m not being difficult, I’m not exaggerating.  I’m telling you about my disabilities – please give me your understanding and respect.

There’s not point asking me to “speak up, speak up, I can’t hear you – speak up”.  I’m speaking softly because I don’t have the energy to speak any louder. Take it as a sign of my disability not as being awkward.  You wonder why I asked to do this over email?

Even if I am standing up when I tell you I can’t stand for long don’t assume I am being difficult.  Assume I know what I’m talking about.  Because when you make me continue to stand I am likely to fall, likely to trigger all sorts of other physical problems including not being able to speak anymore to tell you what the problem is.  My speech, comprehension and memory may be badly affected.  My body will crash and I will be in pain, weak, exhausted in a way that you likely have never experienced.

In a boxYet still you insist I must phone you, not email.  I must visit in person.

I must fill out this form which is 50 pages long.

I must use the stairs to access such and such.

I must stand and wait in line.

I must return this form or answer this letter within 5 days even if I’m too sick to do anything.

I must answer these questions no matter how fast you speak at me.

I must move at the same pace as everyone else around me.

I must fit in with a convieniant time for you to visit regardless of what is best for me – even when you’re from an agency supposed to help sick and disabled people.

I must speak up, recall every piece of information and remember what is said in this meeting (without making notes which is frowned upon).

Blogging Against Disabilism I must take the unsolicited advice of people who once felt quite tired and don’t recognise I have chronic illness which leaves me disabled.

I must laugh when people make jokes about being in a wheelchair and take it on the chin when they criticise me sitting on the sidelines.

And when I do these things to fit into your way of thinking and then I get very sick afterwards and get more disabled – you think I am just being difficult.

Trust me – even when my disabilities are invisible I am still disabled.


Other Blogging Against Disablism Day posts from around the web which caught my eye:

Advertisements
Tagged with: , , ,
Posted in Art, Artist, CFIDS, CFS, Digital, DigitalArt, Disability, Health, Life, M.E., Misc
26 comments on “When My Disability Is Invisible
  1. Carleen says:

    “Trust me – even when my disabilities are invisible I am still disabled.”

    So very, very true! I thoroughly enjoyed your post.

  2. Lauredhel says:

    This is a fantastic post, lucid and eloquent – I identify with so much of it. Thankyou.

  3. Ira Socol says:

    great post, a vital bit of education. Because we do not practice “universal design” – offering choices to everyone in our interactions – we force these absurd conversations in which we are diminished because we “have to ask.”

    http://is.gd/vOQY

    Ira Socol

  4. Penny says:

    “Assume I know what I’m talking about.” “Trust me.” Those seem like such basics of respect, but you’re absolutely right–they’re unfortunately not part of the ground rules in SO many situations. Thanks for writing this up so clearly.

  5. ninacolors says:

    what do you think about sending this as a letter to the editor of the Times? If they accept it, much broader audience (also maybe some nasty responses, tho)

  6. Great post. Thank you so much for writing it.

  7. ashysheela says:

    yes, what Penny said above!

    I hate that situation when you are already using your last drop of energy to actually be assertive for once and ask for what you need/explain the situation that all you get is a blank expression like you are from another planet… time passes… you are about to fall over and are screaming inside “I mean i need it N-O-W!”

    Like when i asked for the radio to be turned down in a taxi when i was feeling very ill and the noise was being interpreted by my brain as actual PAIN:
    Me: “would you mind turning down the radio?”
    Taxi Driver: “would i mind??? Yes i mind! I am listening to the cricket!”
    I had no energy to be assertive and did not reply…

  8. This is a great post showing the other end of the disability spectrum! Thank you for visiting my page today. : )

  9. Wonderful post. I so identify with what you’re saying when I see how other people interact with my son.

    Thanks so much for writing today!

  10. […] has an excellent post, When My Disability Is Invisible, there is a superb graphic at the top of the page and others down the side. I take a feeling of […]

  11. NTE says:

    :Slow Clap: Exactly. Exactly. Exactly. As always, right on point, and a wonderfully written post.

  12. Seahorse says:

    Excellent. I have tried to write on the invisible thing, but found it hard. So it’s great you’ve given voice to this complex experience.

  13. Seb says:

    Beautiful post.

    I think this is one of the hardest things with the illnesses we are dealing with. It’s not like having a broken leg, that is instantly understandable to people. It is amazing though, the number of people I’ve come across who are truly understanding and compassionate with what I’ve been going through. People can disappoint, but the best is when they surprise you with their kindness and compassion.

    Hugs,
    Sebastien

  14. adam says:

    wonderfully well said and written, well done, and thanks from all of us.

  15. cusp says:

    You’ve ‘nailed it ‘ as usual my dear

  16. misswaxie says:

    “I don’t expect you to be a mind reader but when I tell you I have a problem with something you have to trust me that I know what I’m talking about.”

    Boy, is that ever true. Why is it that this one sentence encapsulates everything that’s so challenging about being invisibly ill – and that yet for whatever reason its something so impossible to get??

    I’m glad BADD put me in touch with your blog – not only is your art cool, but I like how you’ve connected it to your self expression about your illness. I actually do a similar thing by making a photo comic about my often comical experiences with long term chronic illness. I’d love for you to check it you – http://acomiclifeindeed.wordpress.com

    Hope you’re having a good day!!

    – Miss Waxie

  17. cinderkeys says:

    Great post. It’s unrealistic to expect people to instantly get it, but it’s not unreasonable to expect them to *listen*.

  18. […] is a never-ending source of inspiration, as this post for Blogging Against Disablism Day 2009 on invisible disability […]

  19. Bryony says:

    Well said. No matter what the condition is that one is living with, authorities and healthcare providers should recognise across the board that the patient is the expert. If they ask for help it’s because they need it, and if they say what they need it’s because they understand better than those ‘sticking to the rulebook’. To be heard is a strangely difficult thing.

  20. Jeanne says:

    Rachel,

    Wow! This post is very well-worded. Any patient with invisible chronic illnesses can relate to the universal themes you so perfectly described.

    The part where you said, “If you push me these will be apparent – maybe while I’m with you or maybe once you’ve gone. I’m not eccentric, I’m not crazy, I’m not being difficult, I’m not exaggerating” is just CLASSIC because every (invisibly) chronically ill person I know has had experiences where others (relatives, employers, co-workers, etc.) have pushed them or tried to push them past their limits. Then, when patients speak up they may be greeted with this “you’re being difficult” attitude.

    Anyone who has an invisible chronic illness (or several) has some idea of the ‘what-happens-after-everyone’s-gone’ factor. The exhaustion. The collapse.

    I know I have relatives that just don’t seem to comprehend what happens to me AFTER our family gathering or outing. “Seeing is believing” for some people… and if they can’t see it, they don’t (or won’t) get it… regardless of efforts to educate them about the pertinent conditions.

    That graphic is great too! Is that a copyrighted picture?

    Jeanne

    P.S. There’s an Invisible Illness Awareness Week every fall that you might be interested in. I had heard about it last year. They do about 20 radio seminars on blogtalkradio and a bunch of other stuff. Lots of bloggers participate.

  21. Jeanne says:

    Rachel,

    Your artwork really is beautiful. 🙂

    Jeanne

  22. Bob Segalman says:

    If I understand, you can talk very softly much easier than you can talk in a normal voice. Given that, would it be possible for you to call Speech-To-Speech (www.speechtospeech.org) and speak very softly to the Communications Assistant who has an amplified headset? She could make phone calls for you and repeat what you say in a 3-way calling environment. Would this work with you?

    • Hi Bob. The Speech to Speech service is really interesting. Thanks for your comment and bringing it to my attention.

      It’s actually the experience of a friend who after speaking for a while or when very ill is only able to speak in a very soft voice. She is is Australia, where your service is available, so I’ll pass on the details to her. Thanks.

      For me, often I struggle with the pace of the conversation and answering questions or making decisions quickly (being able to way up the information and understand what is being said). I’m not sure if the speechtospeech service would be useful for this. Plus I am in the UK where it’s not available.

      But I’m very glad to hear of the work you’re doing. Thank you!

      http://www.speechtospeech.org

  23. Alyson Vega says:

    I am at the end of my rope. The reactions I get from people make me feel like I am crazy. I don’t understand what they are saying and sometimes it is because they don’t understand what I am saying and at the end of the conversation I am screaming out of frustration to be understood. Where can I turn for help? My co-workers ignore me. My boss walks out on me. My lawyer does not have the full picture because I do not have the capacity to present it concisely. I am searching for a brain injury advocate or a miracle! Thank you for your eloquent words!

  24. Mary Scaletta says:

    Oh my goodness, the symptoms you are describing are very much like mine. Do you have a true diagnosis because I have P.O.T.S for sure but I also have this problem where my brain loses it’s memory and in the middle of conversations I don’t understand what people are saying anymore and I lose the ability to speak. That last part is still not diagnosed and I’m still in the dark. Have you done a post on what you have that you could give me the link to?

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

RachelCreative

Rachel Groves, Artist
Lichfield, Staffordshire, UK

Shop
Website
Flickr
Twitter
Pinterest

Archives
Stuff


%d bloggers like this: