Message to politicians- try living on disability support

Cutting welfare for people with disabilities is a vile and savage act.  Any crediting of intent would put our politicians on par with terrible people, so I shall stick with ignorance as the cause. I have worked with people with physical and other disabilities for much of my career and I know pensions and entitlements are more than just subsistence living – it is about survival. People with disabilities have to pay rent, eat and support dependents like anyone else but they also have to pay for much, much more than the rest of us.

Like everyone else, people with disabilities work if they can – but it takes more than personal will to get a job and maintain employment. Putting qualifications and education aside, employers need to provide flexibility, support and accessible environments. Tried getting around in a wheelchair lately? – even an electric one?  An electric chair (if you can afford one) can be worse – try turning around in a small office or corridor or even getting through a doorway. Some people need personal assistance in the workplace.  For example, a person might need help to empty a catheter bag, or be able to pay for a device that lets them empty a catheter bag onto a grassed area, or even to be repositioned in a wheelchair to avoid pressure sores that can kill you (remember superman?), or just eat lunch. Who is going to pay for assistive technology in the workplace? People when they do work often lose access to government subsidies for equipment and other items as a result of being employed.

People with disabilities already pay significant co-payments for equipment which can include wheelchairs, shower chairs, hoists, pressure cushions, home modifications, disposable needs such as bladder management disposables – then there’s medication and personal carers. There are subsidies but they are limited. Often people need more care because they can’t afford the modifications or equipment that would increase their independence.  There are even costs associated with an assistant animal if they can get one. People in rural and regional areas face higher expenses with the delivery of essential needs. Some people face costs associated with ventilators and need airconditioning because they don’t have temperature control – without it death is a real possibility.  Dare I state the obvious, power costs.  I have worked with people with all these needs and many of them are working and most would work if they could find a job. Too many people are still living inappropriately in nursing homes (some on the streets) because they can’t afford independence. People with all types of disabilities of all ages have hidden expenses that people without physical or mental disabilities don’t see.  It is more than just paying rent and eating. We should be going forward not backward.

Message to politicians: Try living for a year on a disability support pension with the same expenses and environmental limitations as a person with a disability and let’s see how well you fare.

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Footsore on Valentines Day

Last week, I went to see a movie with a new Date. We’d had dinner together the previous heartweek and he understood that I am deaf.  The movie was great (as befits its title “The Great Beauty”) . . . the date not so much.

I am fifty-nine years old. I was born deaf and belong to the 1950s generation of “oral deaf” children. This means that although I am deaf (“moderate-severe, sloping to profound” according to my most recent audiology assessment), I have sufficient residual hearing that allows me to speak rather well. Not perfectly, but not bad: the missed sibilants and the occasional monotonous tone in my speech patterns reveal my deafness. I work hard to keep my speech patterns rhythmically inflected.

I also work hard to listen, read people’s lips, stay focused on their faces and body language, and follow the flight of their words. I do all this listening and attending work because I want to be connected to what they are saying. Connection begets connection; it is the origin of understanding others, which in turn evolves into empathy, compassion, and a reciprocal sharing of our humanity.

Which brings me back to my Date. He mumbled. Not once; not twice; but thrice. Three times I asked him to speak more clearly; three times he continued to channel Marlon Brando’s performance as “The Godfather” as if he owned that role. Remember: we’d already had that dinner the week before. I’d already exhausted myself over a glass of wine (just the one glass; I was trying to do “Dry February”) by peering at his clenched lips and trying to find meaning in his stiff, expressionless face.

It was late; I was tired; I spat the dummy. In the foyer of the cinema. In public, and in full hearing view of all and sundry. “Look”, I cried out, “if we are going to get along, you really must speak up and speak clearly. Why can’t you do this one simple thing for me?” The Date looked stunned. He mumbled, “I’m sorry.” And then (you’re going to love this!), he said, “I don’t know much about deaf people. I don’t know how to talk to them.” I snapped back, “I am not going to do Deaf Studies 101 for you now. Just speak clearly. That’s all.”

We’ll draw a veil over the next couple of hours. Suffice to say, there will be no third outing. However, my anger and frustration with the Date is not the point of my story. Stay with me.

A couple of nights later, I recounted my story to a life-long and close friend. We have known each other since we were teenagers, and we have shared much with each other. The good, bad and ugly.  My friend is kind and wise; I anticipated that she would sympathise with me. I thought she might say something like, “What a boorish man!” Actually, I would have settled for a simple “oh dear” sigh of empathy.

Instead, what I got was a reminder of how the hearing world persistently walks out of step with me. And I am deliberate in my syntax here.

I have spent the better part of my 59 years learning how to walk in step with the hearing world; how to speak clearly, avoid being too expressive, keep my hands still, don’t look wounded when others laugh because I’ve misunderstood what they have said, remain stoic in the face of others’ criticism when I ask them to repeat what they’ve just said—“Oh for God’s sake, I’m not going to say it again. Why can’t you just listen properly? It doesn’t matter anyway; it wasn’t that important.” (Why say it in the first place then? Why indulge in drivel?)

And yet, when I voiced a complaint to my friend, her first and immediate response was to say “Don’t be offended, but you need to see the situation from his point of view.”

Really? From his point of view? What happened to the authority and legitimacy of my point of view? If I was a Jew complaining to my friend about anti-Semitic behavior, would my friend have admonished me, “You need to see it from the Gentile’s point of view”. Or if I were an Aboriginal Australian complaining about being excluded from a job opportunity, would my friend have said “You need to see it from the white employer’s point of view.” Or what about if I was a young woman who had been raped by her uncle? Would my friend have clucked at me and said “Oh, but you need to understand your uncle’s needs.” Of course not.

So why is my perspective as a deaf woman, holding my own in a dominant (and dominating) hearing world of so little value? First with the obtuse Date, and second with my life long friend. Where is their effort to connect with me in these exchanges? To walk in my shoes? Because let me tell you, I am damned footsore from walking in the shoes of hearing people.

I don’t know the answer. Do you?

 By Donna McDonald, Guest Blogger on socialworksocialwork

Listen to Donna on Life Matters  on The Art of Being Deaf

Read Donna’s bookThe art of being deaf: A memoir

Watch Donna on writing her memoir