Explaining your disability

[ClassAction]

I’ve been curious for a while now as to how other people explain their disability. In particular, I have a non-physical disability which makes it confusing for some folks. They don’t understand why I can’t do weekend chores for extra lessons (stress) or why sometimes I’d rather not socialize and just ride or hang out in a horse’s stall (depression).

I’ve had varying success in explaining my situation to people and I’m wondering what angles you’ve taken. I know we touched on this briefly in another thread but I think it’s a topic deserving of a thread of its own. How do you explain and what have you done when your explanation seems to be thoroughly misunderstood or ignored?

[Drive_NJ]

I had lung surgery some years ago and a wise nurse told me… Take your time getting back to work. Go when you are really ready. People will give you a break for the first week, maybe two and then they expect you to be back to normal… especially if it inconveniences them in any way.

If its not in their face like crutches or a chair, they simply forget and expect you to be completely up to snuff.

A simple “that won’t work for me at this time” re extra work or “I just need some time alone now” should suffice for strangers and should remind your friends. You don’t need to go into detail.

[Wayside]

Unfortunately, I think many people do tend to be really confused by disbilities/illnesses/conditions they can’t see. Sometimes it’s worth explaining to people, but frankly there are plenty of times I just tell people I’m not feeling well enough to do things, without a long explanation. Most people seem to be pretty understanding if I say something like “I’m sorry, I’m just not feeling up to it today.”

And if you missed where I linked to it in another thread, I really like The Spoon Theory written by Christine Miserandinoh. http://www.butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf

Although it would be nice for us if the people we encounter could understand what we’re going through, that’s a difficult thing to ask. It’s hard to really “get it” unless you or someone very close to you has gone through it. What’s more important, imo, is that the people around you respect your descisions and feelings.

[Invite]

Don’t worry

Half the time you plan a huge explanation and people don’t understand anyway. I have a very weak immune system along with my other problems, so I used to just tell people my body can be very bossy and lets me know when it wants me to relax.

Sadly, I do not think the average person understands the stress mental illness can put on a body or a mind. Though I wish I didn’t have to say this, it is sometimes best to leave the depression part out. Such a stigma is still attatched to mental illness and some ignorant folks think you can just “snap out of it”.

You do not have to explain your disability to anyone, but I know how it is to feel that you have to. When people ask you about mucking for extra lessons, tell them your plate is already overflowing with obligations. When you want to ride or bond with your horse instead of chatting, tell people you have limited time to ride and give your horse lots of attention, so your time at the barn belongs to your horse.

In all honesty, I have a very visible disability that is never going to permanently leave me. If I am able to amble about wiithout my cane, people ask if I’m all better. I’ve given up on the explanations. I am what I am.

Keep your chin up and keep riding!

[RMJacobs]

The biggest challenge for me is politely turning down offers I get from friends and acquaintances to either ride their horses (not possible) or worse, train them to drive (are they nuts?). I often hear, “Oh, you’d be fine on MY horse.” Well, if I can’t ride my ancient, slow, kind mare most days, how am I going to ride someone else’s young, energetic horse? My disabilities are invisible, and I’ve gotten really tired of explaining to people who really don’t want to understand.

After twelve years of rheumatoid arthritis, these days I give a short explanation. If the person seems receptive, I might go into more detail. If they can’t or won’t understand, I figure that’s not my problem, it’s theirs, and I don’t let anyone pressure me into anything.

Rebecca

[Invite]

[QUOTE=RMJacobs;4520257]
The biggest challenge for me is politely turning down offers I get from friends and acquaintances to either ride their horses (not possible) or worse, train them to drive (are they nuts?). I often hear, “Oh, you’d be fine on MY horse.” Well, if I can’t ride my ancient, slow, kind mare most days, how am I going to ride someone else’s young, energetic horse? My disabilities are invisible, and I’ve gotten really tired of explaining to people who really don’t want to understand.

After twelve years of rheumatoid arthritis, these days I give a short explanation. If the person seems receptive, I might go into more detail. If they can’t or won’t understand, I figure that’s not my problem, it’s theirs, and I don’t let anyone pressure me into anything.

Rebecca[/QUOTE]

You go girl. I totally agree with more explanation to the receptive and short to the others. Maybe some of them who are not understanding could spend a day or two in our bodies

[Piaffing]

When I have explained my disability to people, they look at me like I have six heads when I say I have a spinal cord injury. They look at my legs and say but your walking. I have to further explain that the type of injury I have effects mainly the arms, but my hands and feet are numb so I can’t feel them.

I get further comments of:
“If you can’t feel your feet how can you move them” I’m not paralyzed.
“Can’t the syrinx be drained?” Yes it can, but the risks of surgery are too great and the damage is already done to the nerves.
“Can’t the spinal cord be sewn up” Ah no.

I try to keep the explanation short and sweet.

[HannahsMom7]

CA - this is very interesting as I will be signing my horse over to a younger rider tomorrow. I had a stroke 2 yrs ago and tho I am 98% recovered, he (Belgian cross) is simply too strong for me.

People at the barn are still saying “if you try trainer XYZ, you can keep him.” What they don’t understand is he is what he is, and I am what I am. We can’t change our basics. To hear this is so frustrating to me as I am losing my horse. I have simply given up explaining and just say I have found him the best home because we are not a fit any more.

I feel real friends would understand and support as a few have,
for all of us, problems or not!
Rita

[cadriver]

Well, it isn’t to hard for me to explain my disability since I’m in a chair.

When I started competing 12 years ago (Ive been in a chair for 18 years), I had a variatey of issues with just getting around show grounds etc. I know I have made it easier for those who have come after, with rule changes and just perception changes.

It is much easier for me to put someone in my shoes. I offer them my chair and as they try to wheel from the trailer to the horse stall they usually flip over or they can’t get there. Very eye opening.

There is just so much one can do in one day. I can only transfer in and out of my huge dually truck a couple of times in a day. Or even in and out of a golf cart. Luckily I have a great support crew that understands these things, and they hate being around me when I’m to tired so we try not to get to that point.

We just have to take care of ourselves and short explanations work well, save the longer ones for the evening while your relaxing and haveing a beer or glass of wine:-)

Diane

[Leena]

This is also hard since most of us looked healthy…

[RMJacobs]

[QUOTE=Invite;4520336]
You go girl. I totally agree with more explanation to the receptive and short to the others. Maybe some of them who are not understanding could spend a day or two in our bodies ;)[/QUOTE]

Thanks for the support. Oh, I can’t tell you how many times I’ve wished someone could walk in my body for just one day! It would be quite an eye-opener.

I had one insensitive clod at work comment when I was getting out of my car (I have a handicapped placard for parking), “Lucky you, you get to park so close to the building!” I was livid. I started shouting at him (not something I’d usually do, but I really lost my temper): “Do you think that just maybe I’d trade this parking space for a three mile walk if I could just have my old, normal abilities back!?” He apologized.

I also said to another idiot who questioned why I had a handicapped placard, “Wow, I’ve never met a psychic doctor before! Why are you working here if you have those skills?”

I swear, usually I’m not that snarky, but some people just push me over the edge. I think we’ve all been there at one time or another.

Rebecca

[Invite]

[QUOTE=RMJacobs;4522523]
Thanks for the support. Oh, I can’t tell you how many times I’ve wished someone could walk in my body for just one day! It would be quite an eye-opener.

I had one insensitive clod at work comment when I was getting out of my car (I have a handicapped placard for parking), “Lucky you, you get to park so close to the building!” I was livid. I started shouting at him (not something I’d usually do, but I really lost my temper): “Do you think that just maybe I’d trade this parking space for a three mile walk if I could just have my old, normal abilities back!?” He apologized.

I also said to another idiot who questioned why I had a handicapped placard, “Wow, I’ve never met a psychic doctor before! Why are you working here if you have those skills?”

I swear, usually I’m not that snarky, but some people just push me over the edge. I think we’ve all been there at one time or another.

Rebecca[/QUOTE]

Okay, you just made my night! On top of all of my “normal” disabilities, I have a virus, sinus infection, bronchitis, & we can’t keep my blood sugar up, sooo I have been in a “poor me” mood. Thank you for making me laugh. I really do treasure those brilliant folks who think we are lucky to have handicapped placards and/or plates.

One of my worst handicapped moments was going to a doctor’s appointment in a medical complex. My mother had to drive me and offered to get out my wheelchair, but I was determined to hobble in. Wouldn’t you know, they had rugs on top of tile as you entered. My left leg was just dragging along and managed to pull the rug which caused me to fall. We’re talking rug burn on the face, etc. People actually walked over and around me as my mother was helping me up. I was just face down and immobile. Talk about rude people! A little side note…said building is called “OVERLOOK Medical Park” I was certainley overlooked!!

[RMJacobs]

[QUOTE=Invite;4522577]
People actually walked over and around me as my mother was helping me up.[/QUOTE]

I bet you were wishing your mother had tripped those insensitive jerks!

I was trying to explain to someone recently how differently people treat someone who is visibly disabled, especially in a wheelchair or on a scooter. She didn’t really get it.

I will use either device under certain circumstances–I rent a scooter at amusement parks, and recently used a wheelchair to tour London museums. People either pretended I wasn’t there or treated me as if I were stupid. Helloooooo! It’s my joints that don’t work, not my brain! I would venture a guess that I am smarter than those knuckleheads. In a London museum, I had one family (American, not British, of course) pile on an elevator that was already full and lift their child over me, and the kid kicked me hard in the knee. Man, that hurt! I was quite startled and let loose quite a nice flow of four-letter words. The parents were horrified–at me. I didn’t feel too bad about it for some reason. My husband, who is a peaceful sort and has never been in a fight in the nearly 30 years I’ve known him, came close to decking the dad.

Rebecca

[Leena]

My mom has MS and we experiment the same situations unfortunately. Either people were taking my mom for a dum…either they were very rude…

I often asked myself where humanity was…

I suffer a cancer for 2 and half years…I am not green…I do my grocery, clean my house and ride my horses…Yes I feel tired but I have such a nice tan people think I am healthy !

I believe a few people has really compassion and respect…

[DressageGeek_Ribbon]

I think sometimes it is just not thinking. When I was in college I read for a blind grad student getting her MS in psychology (in fact, all the psych I know I learned from reading to her). One time, she asked me to proofread a letter she had typed (old fashioned way, we’re talking 1978 or so). The letter was full of spelling errors - she must have sensed my censure (after all - she was a grad student at Cornell University), and she reminded me that when you don’t see the words, and you don’t spell the words, you lack familiarity. Made me stop and think. The same way, how many times do people hold open a door for someone who is blind, and never think to say, “I am in x position, and the door is open?” I needed to be edumacated!

[Invite]

[QUOTE=DressageGeek “Ribbon Ho”;4523411]
I think sometimes it is just not thinking. When I was in college I read for a blind grad student getting her MS in psychology (in fact, all the psych I know I learned from reading to her). One time, she asked me to proofread a letter she had typed (old fashioned way, we’re talking 1978 or so). The letter was full of spelling errors - she must have sensed my censure (after all - she was a grad student at Cornell University), and she reminded me that when you don’t see the words, and you don’t spell the words, you lack familiarity. Made me stop and think. The same way, how many times do people hold open a door for someone who is blind, and never think to say, “I am in x position, and the door is open?” I needed to be edumacated![/QUOTE]

I can totally see your point. In some cases, I think people don’t know how to handle the NQR folks, so avoiding them is easier. There are many times when my just being there makes people feel ill at ease b/c they are afraid of saying or doing the wrong thing. We all, able bodied and disabled, walk a fine line when it comes to being politically correct. You never know how someone is going to take a gesture or a comment.

[equineartworks]

I have MS and some additional issues and this should make you chuckle…

At a therapeutic riding facility we used to volunteer at I was leading a horse during a summer session. It was like 98 and humid and we were inside…the kind of weather than just does in people with MS. I started getting slower, slower, weaker, weaker. I made mention that I wasn’t sure how much longer I could make it without having some issues but I kept getting a “just a few minutes more…just five more laps” response. The director knew I had MS but totally dusted it off. My DD said “excuse me, but my Mom is really struggling…remember? She has a special need too?” What made it so sad is that there were some able bodied teens standing around watching, and not one of them were trained properly to see when something is going wrong. Thankfully my daughter was.

Just another thing that went into the learned what NOT to do pile for our program :winkgrin:

[ClassAction]

I’m glad this thread has been useful. I confess that even after seven years I still get anxious and feeling as though I need to “explain” to everyone the ins and outs of why I can’t do things. I doubt that will ever go away 100%.

I am getting better at saying no to things and generally speaking up for myself. This semester I took an entire week off because I could feel myself heading downward (and the week really helped!). I had to partially explain why I need the time by saying I have a neurological disorder and was having an attack. While strictly true, it wasn’t the entire truth by any means.

I also get folks who feel it is their right to pry and pry and pry because they want that new piece of gossip. One girl in my lab keeps bringing it up whenever possible. I’ve decided that the next time she not-so-subtlely asks what my illness is I’ll tell her that I’m infested with alien eggs and they keep threatening to hatch. I wonder if I can keep a straight face through all that!

My personal goals are to keep getting better at self-advocating. Ucky and uncomfortable (and my inner four year old whines that it’s NOT FAIR DAMMIT!) but necessary.

[_Teddy]

For me if they arent seeing im nqr(It can be ovbious if someone pays attention) then I dont bother explaining anything or saying anything because those would be the people who say “you look fine”…

If someone pays attention and says “oh your balance is a little off” then I will happily explain why and then they are like “that makes sense”

I usually dont bother telling people because my outward issues are on and off so they dont show all the time(stiffness ect) but almost nobody outside my family/close friends I dont tell about my anxiety/ocd because well they dont see it(okay sometimes if im really wired…)

[Bluey]

Talking about qualifications as disabled that others can see, everyone can see that I am shorter than most adults.

Does being “very” short alone qualifies as a disability?