I wish somebody would tell my body that it has to pick just one disability….

So, as you know, a few days ago I was able to work with an organization to reschedule a trip to the fall. However, during that online conversation a subject came up that is becoming of more and more of a concern to me. Why do I have to choose which of my disabilities is the one that needs helping? When they all do.

On this occasion I was booking an accessible room. For some reason though, the hotel management in question have made the assumption that somebody who is deaf wouldn’t also have mobility issues. So I had to choose. Did I want a room with light alerts, rather than sound, or did I want an accessible bathroom?

At this point, I have to balance my safety. Which is more important? I will have Kai with me. His sound alerts are great for sounds he knows but I have no idea what this hotel’s sound alerts would be. It’s too late to find out that he doesn’t recognize their fire alarm as an alarm, when it’s already going off and I’m tucked away in our room completely oblivious to the fact that it’s even going off. Therefore, I decided that having light alerts would have to be the priority.

That now means that I’m going to be at a greater risk of falling. Instead of having a walk in shower, I’ll have to climb in and out of a bath tub in order to take a shower. Hopefully, there will be handrails, but most likely not.

Kai isn’t old enough to do brace work yet (Service Dogs shouldn’t be taught to take weight until their growth plates are fully closed, and their joints have been verified as sound by x-ray, after they’re two years old) so he won’t be able to help me.

As a result I’ll have to be very careful and slow.

There will be less room to move around the room and most likely it will be carpeted, increasing my risks of knocking myself (and fracturing) and of being exposed to allergens.

Whereas a room set up for mobility – typically in the form of a wheelchair – usually has a smooth floor, more space to move around and a walk in/ roll in shower; just as I do at home.

Then we come to medications. Thankfully, most hotel rooms come with a fridge as standard these days. However, every now and then you come up against one that doesn’t and it has to be a special request. To be fair, most hotels won’t charge you for it once you explain that it is for medical reasons. However, when added as a special request they often end up in odd positions that are difficult to use.

As you can see, booking an accessible room is a complicated issue. What I really don’t understand is “Who decided that people only have one disability?”

My own experience is that for many of us, especially those of us with invisible disabilities, we rarely have just one.

Our body systems don’t work independently of each other. My hearing problems effect my balance; that impacts my mobility. In my case my primary disability – Osteogenesis Imperfecta (OI) – has an impact on almost every system within my body. It is one of the causes of my deafness, and it is the cause of my scoliosis, mild PVI, and overly sensitive eyes to light.

Add in my fibromyalgia, severe brittle asthma, Ménière’s disease, intermittent Blood Pressure issues, Severe non-combat Complex PTSD, Traumatic brain injury with Prosopagnosia, Diffusely fatty liver (non alcohol related), Irritable Bowel Syndrome with gluten and lactose intolerance and of course my favourite – anaphylaxis – and you can probably see that there isn’t much of my body that isn’t impacted by my conditions.

Yet when I’m asking for disability accommodations I have to choose. I can be deaf, or need mobility support. I can be blind or allergic. What I can’t be, apparently, is in need of more than one type of support.

Bizarrely it’s not just the hospitality industry that makes this assumption. How many of you have seen signs in your doctor’s waiting room stating “One problem per appointment”?

It’s increasingly common to see. The point isn’t that doctors don’t recognize that we have more than one condition; the issue is that they need more time allocated to us if we need to discuss more than one. However, that doesn’t seem to be made very clear to patients.

In my case, my life feels like a tangled ball of string. Most of the time, my doctors and I, we just about hold it together. The pieces are carefully balanced and intertwined and as long as no one piece of string is tugged on too much it pretty much stays together and rolls along reasonably smoothly.

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But then, something happens that drags one of those pieces of string out of the ball and everything that it touches gets hurt along the way. Occasionally, if it happens fast enough the impact is fleeting and we simply loose that string and my ball readjusts.

A good example would be my getting a common cold. It has a big impact on much of my body but once I’m over it, my string continues as usual. It’s like I just need to let the ball rest, with a little bit of support, before it can continue on its way rolling through life.

On other occasions the string that was pulled turns out to have been fundamental to the structure of the ball. Consequently the ball looses its integrity and shape and it takes time to find out how to put it back together.

Sometimes we need to carefully insert a new support into the ball to reinforce the structure.

Sometimes the ball looks less and less like a sphere and becomes rather more cumbersome for rolling along.

Sometimes the ball comes to a complete stop, while we take stock and work out how best to help it regain integrity and purpose. That’s where we’re at right now. My ball is looking more like a collapsed pile of strings, with no obvious form, and a couple of new strings have been added, and we’re not quite sure how they fit in with the other strings yet.

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Hopefully with a bit of help from the experts in putting the ball back together in the forms of treatment, medication and understanding my ball will get reformed shortly and I’ll continue on my way rolling through life.

A little less smoothly probably but once more, able to roll.

Getting there though brings me to the “Spoon Theory”.

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Christine Miserandino came up with this theory some years ago and it really resonates within the chronic disease community. You’ll even see people with patches on their Service Dog vests that refer to spoons.

Basically the theory goes that when you have a chronic disease you start the day with a limited number of spoons, servings of energy if you like. Unlike healthy people, who often have an unlimited supply of spoons, or are able to create new spoons pretty easily, we only have a small number to begin with.

From the moment we wake up, assuming that we slept to begin with, we have to decide how best to spend our spoons that day. Some days that means that we don’t shower because we know that later in the day we’re going to need the ‘shower spoon’ to cook dinner.

We don’t get to do both.

We have to choose.

If we are daring enough to try and borrow a spoon from the next day then we know that we’ll really be paying for that with reduced spoons for several days. Sometimes it’s worth it. Sometimes it’s not.

Kai helps me to use my spoons more effectively. Instead of my needing to use a whole spoon to pick something up, when I’ve dropped it, Kai picks it up for me. Now when we’re at home, that ‘s a nice easy gain. When we’re out in public it probably doesn’t save me a whole spoon as I then have to deal with all the comments and attention of people who can’t seem to believe that a dog can be trained to pick things up and give them to you on command. It can be as simple as his leash or as complicated as  a dime. Regardless it is apparently incredible to see, for many, and leads them to think that it is just fine to ask me:

“What’s ‘wrong’ with you?”

“Will you train my kids/dogs? “

“Can I buy him from you?”

Those comments are just for starters. Some are far more rude and invasive.

Some days dealing with that kind of interaction only uses a part of a spoon for me. Other days, it can use several spoons. I just don’t have enough energy to deal with the education needed.

So I’m putting a plea out there to the hospitality industry first – please stop making us choose between our disabilities when requiring accommodation. Please set up more rooms to be truly accessible by people with all kinds of difficulties, often within the same body.

To the world, in general, my plea is to think about those around you. Do you know people dealing with chronic disease?

If so, what can you do to help them conserve their spoons today?

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Finally, I do wish that somebody would inform my body that it’s only allowed to be affected by one condition at once.

Just think how many more spoons I’d have!

fibro6

fibro6

3 Replies to “I wish somebody would tell my body that it has to pick just one disability….”

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