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Helping people with disabilities – stage in life – by Rev Jason Forbes

Categories: Church,Stories

how-long-is-a-piece-of-string

It can be perceived that people with disabilities are always in need of help, and assumed that help will be always welcomed. On the other hand, people who are sensitive to people with disabilities may think any offer of help will impinge on a person’s independence. When in actual fact, any help would be welcomed. This led to a few of my friends asking about helping a person with a disability. How do you know when your help is appreciated or not? Without being disparaging to those who ask the question, my concern is the question presumes the possibility of an ‘ABC guide of relating to people with disabilities’. However, the question is rather like asking “How long is a piece of string?” There are several factors to consider when determining the length of a piece of string. The same is true for helping a person with a disability, because people with disabilities are individuals. A one size fits all approach is not going to work. For instance, to take an obvious example, having a braille Bible at church may be helpful for someone who is vision impaired, however it won’t be helpful for someone who has cerebral palsy, but otherwise has sight. This is an extreme example of two people with different needs sharing the label ‘disabled’. But we can also expect these differences to occur in more subtle ways. What may be helpful for one person may be frustratingly unhelpful for another.

To answer this question, I’m going to write largely from my perspective, and give anecdotes from my experience. I’m going to answer this question in a backwards kind of a way by discussing when help isn’t appreciated. Perhaps when we understand the reasons behind this, we can deduce when help is appreciated.

So, what are the factors to be considered? Concerning the person with a disability: stage in life, value of personal space, and requirement of specific procedures. Concerning the helper: competencies, relationship to the other person, and attitudes. If these categories seem a bit vague, they will become clearer when they are discussed more fully. Over the next several weeks we’ll be looking at each factor. This time we’re looking at a person’s stage in life.

A person’s outlook on life changes with age. Rewind 20 years, if someone tried to help me, they were in danger of loosing their head. Why? Probably because I was a teenager seeking empowerment and self-definition. No one was going to ‘cramp my style’, thank you very much! But now, having lived on my own for 16 years, if someone wants to cut me a break, I’ll take it. And people have! I’ve had someone say to me whenever I want respite, come and stay with them for a few days. And it’s great to have that informal support in the church.

Now I’m approaching 40, I really am over this whole “overcome your disability” regime. Nowadays, I tend to think, “I have a disability. It’s restrictive. Live with it!” So now I’m learning to live within those boundaries, and I’m much more accepting of help. Having said that, I’m conscious that I’ve just spent 4 weeks in New Zealand carrying on as if I didn’t have a disability. Hmm… perhaps I’m not quite over the “overcome your disability” regime.

Of course, some people never get over the “overcome your disability” regime. For these people, help is only appreciated some of the time. Conversely, there are also bludgers – people who expect you to do everything for them simply because they have a disability. There are reasons behind this. It could be that the person has never be taught how to take responsibility and do things for themselves. It could be they have always had other people do things for them. This is often the case if a person comes from an institutionalised background. There could also be a fear of having done something for themselves once, they’ll always have to do it, and never be offered help again. After all, someone may be able to do something but not without an extraordinary effort. So these people need to be encouraged to do things for themselves, and to be reassured that help is still available. Again, my favourite Greek verb comes to mind – parakaleo. It’s often translated as ‘encourage’. It has the connotation of getting along side a person, urging them on. Sometimes, this requires ‘hard love’.

Just knowing that help is readily available is a really helpful thing in itself. When it comes to preparing food, I have a tendency to trash kitchens. It’s just part of the course of having cerebral palsy. I don’t mind trashing my own kitchen, but I’m reluctant to trash someone else’s kitchen. So, when I stay with other people, I tell them about my tendencies, and give them a choice: either I can help myself, or they can do things for me in the kitchen. I guess it’s not surprising most people jump at option B. And that’s fine. I just want to know where I stand.

Except, on one occasion, I put the question to my host, and the conversation went something like this:

“We don’t care. What do you prefer?”
“I don’t care. What do you prefer?”
“Well, we don’t care. What do you prefer?”

Nothing was formally decided. As time passed, I noticed if they were in the kitchen, they were happy to help me out. If they weren’t in the kitchen, they were happy for me to help myself and clean up any mess afterwards. This put my mind at ease. I knew help was there if I needed it, and I also knew I wasn’t interrupting their routine by having them waiting on me hand and foot. I received help just the same as someone without a disability receives help.

Help will be appreciated depending on how determined the person is to do the task for themselves, and this will vary with the severity of disability, and the personality of the individual.

Rev Jason Forbes
Jericho Road Disability Advocate