Bearing Disability: 3 frustrations of the Disabled

Ok, I’ve been wanting to do this kind of post for a while now but feared I might get the tone wrong. I don’t want to sound angry, although this topic covers three of my frustrations when dealing with people who do not understand my disability. I want to build awareness.

This post will be in a minimum of two parts, the second part co-written by a friend of mine and myself.

Sometimes people who do not have a disability that affects their mobility and the way they carry out tasks can do or say things that are not intentionally meant to be hurtful but still have the effect of being hurtful

The “Would you like a drink?” Mime

This happens a lot to somebody who is clearly disabled or tells a stranger they are disabled. It is extremely frustrating, rude and patronising. You get the really helpful stranger miming their words as they speak to you. They also do that thing where they speak slower and act like they are shouting by opening their mouths wider but the volume stays the same. I call this technique of conversation with a disabled person the:

Would you like drink?

Why do I call it that? It is the most common mime I know. The person will open their mouth wider, making the shapes of each word slowly and pretend to hold a glass. As they say the words “would you like a drink?” they bring the mimed glass to their mouth.

I think it’s one of those misconceptions people struggle with. This person is disabled so they either cannot hear me or cannot understand. I must act like a fool to communicate with this person.

Obviously, there are going to be people who cannot hear what you are saying or not be able to understand the most basic sentences. But that will become clear the more you try to communicate with a person. Even if the person can not “speak”, they will let you know in their own way.

I once had a friend I made at a camp for disabled children to socialise—there was a good deal of able-bodied children there too.

In memory of a friend

This particular friend, she could not speak verbally but she could communicate with you if you gave her the chance. Most of the time, she had a laminated keyboard but if for some reason, she did not have this, she was able to communicate with a bit of non-verbal Makaton— a communication that is similar to sign language but also very different. Different because it is one of those things people do without knowing it.

Actually, the “would you like a drink” mime is a good illustration of Makaton. The person uses a common symbol and speech. This is good if the individual who needs it but can come off as patronising and stereotyping if they don’t. Especially with exceedingly slow speech for emphasis.

With smartphones now—ones better than you got way back in 2011—it is much easier for a person who struggles to speak verbally to speak IF they want to or can use a phone.  So there are different ways to communicate with a disabled person.

So what should you do if you meet a disabled person?

1. Start by talking to someone with a disability as you would another person
2. If they seem to have trouble communicating, be patient, they will find a way. Yes, if they use a laminated keyboard, you may have to have a guess at the full sentence. This is actually relatively easier than you think.The friend. She used the keyboard to spell out “crush” so I knew she had a crush on someone. Naturally, I asked who and she spelt his name. So it may be one or two words the person will spell but the meaning of the sentence is always clear.Side note: This friend was good at revenge when you teased her 😉
3. Adjust your vocabulary and pace of speech as needed. It will become clear the more you speak to someone.
4.  Patience is the key. Even if the person can verbally speak, they may be slow for fear of a speech impediment, stutter or clarity.

The “You should be more able” implied comments

A few years back, I invited someone around for dinner, saying that I would cook us a meal. I think it might have been bolognese. As mentioned previously, I use a lot of adaptations for cooking or any other kind of daily activity.

This person saw me get the jars out. The frozen meat and the frozen veg. They saw me get my chip-pan which I use to strain the water from my food and then said:

Oh, when you said cook, you meant jars and stuff. I thought you actually meant cook, you know, from scratch!

Sorry, what?

This person wasn’t a stranger, otherwise, I would probably have forgiven and forgot the situation. They knew I had a physical disability, wasn’t able to cut up fresh vegetables and the like. At the time, all I could do was stutter and say “well… I, erm”. The person’s response was something along the lines of:

Not that it matters, you know. Still food.

But I felt like it did matter. Otherwise, why would this person say it? If it didn’t matter to them, then they wouldn’t point out that I do something different to them.

This is even more frustrating because the person knew I had a physical disability and how that affected me. So, their comment was doubly hurtful because it was not like they did not know about my condition or even forgot about it. They also had their own condition to contend with.

There have been occasions when this same person has also said to me:

Well, maybe if you walked more then you could walk further? You know, practice?

Hall Managers not understanding

Then there was an incident in one of my halls of residences where I complained about theft of my spoons. Yes I know, spoons are little and cheap etc but I can get through around 6 teaspoons a day by making tea—the drink—and when eating food.  I can’t eat with a knife and fork so they are important to me.

A member of staff told me to put them in my room. The problem with this is the door automatically locks when I leave my room and I have the use of one hand. I explained this to him and he said:

If the faculties aren’t suitable for you, maybe you should find somewhere else.

Basically, shifting the blame and responsibility of the theft onto me. Maybe because it was just some spoons to him? But then I did have all my food stolen out the freezer too.

I did eventually put stuff in my room for ease of mind. The halls gave me a mini-freezer and I propped it open but it got to the point where if I had an issue I hated the thought of having to speak to this member of staff.

Implied Burden

A friend of mine, who will probably go into more detail on this next week, has also told me that careers have said to her that she should give her parents a break when doing something the family do that is usually routine. Essentially saying that she’s a burden without saying it.

So really, this bit is more about general courtesy really. Words can hurt and people will read second meanings into them. The food comment to me seemed like an accusation. That I lied when I said I would cook because I cook differently. It was saying that my food can’t possibly be good because of the way it was cooked. The walking comment is like saying I am lazy and that is all that is wrong. The hall manager is saying he doesn’t want to know, can’t be bothered and it is my fault for not being able to manage better. My friend’s carers are basically saying that she is demanding and that her family routine is too much… she should go somewhere and pretend she doesn’t exist for awhile.

Even though these people never said those exact words, that is what they are all implying in their own way—or that is what it feels like they are saying. They are saying we are not able enough for the world and we should try harder to fit in. That we should hide, pretend we don’t exist. We are the blame for our own disability and for what we cannot do or what we can do but differently.

So what should you do?

1. Never point out that someone does something different to you. Or if you do, be nice about it. My niece and nephews would point out that I drive differently to their nan (because I have adaptations that they can see) and believe it is the coolest thing. So if it’s along these lines then it is fine but if it is to point out that it is not the norm, then that is not ok.
2. Don’t ever assume that the person just needs more practice. You could practice flying all your life but without wings, you are not going to fly.
3. If you are looking after someone with a routine that is already established, listen and try and fit around it or fit into it. Don’t say they are a burden.
4. If someone comes to you asking for help, don’t push the blame onto them if you cannot be bothered to listen and take it seriously.

The “Are you really disabled?”

Challenging someone’s disability can come off as rude, especially if it is not relevant. Don’t get me wrong, there are times it is good to challenge someone and in a polite way but there are wrong ways too.

An example of a right way would be if a person is parked in a disabled bay and has not displayed the badge. In that situation, you can say something along the line:

Hi, I noticed you haven’t displayed a badge, are you aware this is a disabled space?

It might be they forgot to display it and if that’s the case, they’ll be thankful. But also be careful if you do challenge someone, people can be violent.

However, if the person is displaying a blue badge, it is not ok to ask to see it belongs to them. Of course, there are people who abuse their friends or family members badge but a person issued with a badge only has to show it an official. If you think they are abusing it, take a photo of the side that is displayed and report it. The issuer will be able to take it further but remember you can’t see all disabilities.

Yes, Mental Illness is a disability

I think people with mental illnesses get the “are you really disabled?” A lot. There’s this stigma that mental illness isn’t real or not a real disability but let me tell those skeptics this. It is just as physically disabling as a physical disability. There is a difference. The physically disabled are more or less in control of their body, excluding spasms and involuntary movements.

A mental disability can cause the person to lose control. When I have an anxiety attack, I am often frozen to the spot, heaving. Forced to crouch. All the time, I’m trying to get control but have you ever fought with one of your most essential organs before? The one that gives instructions to the whole of your body? It’s exhausting.

So saying to someone who is depressed that they just need to be happy does not help. Or saying it’s just in the mind… Yes, it’s in the mind and the mind controls what people think and do. What they feel. A mental illness is still a disability. For me, its more crippling than my physical aspects.

Regardless the disability, it is rude to say that it is not real. A disability rarely falls into the stereotypes.

I had a friend who was recently cyber bullied. He has visual impairment, has a guide dog and can use a phone. This stranger who knew nothing about him posted on their city page stating my friend’s disability wasn’t real because she could use a phone.

This went on for a while before the person finally stopped, it was really stressful for my friend who felt he had to defend himself and his disability. We have enough of that with PIP.

So what should you do?

1. If you think someone is abusing a disabled faculty, challenge them politely by asking them if they’re aware that it is for the use of a disabled person.
2. Don’t say it is not real or it is all in the mind. The person has more issues about than defending themselves to you.
3. Don’t be surprised if the person does not fit into the stereotypes you expect.
4. If you want to know more, a person with a disability won’t usually mind if you are polite and appropriate.