Dystonia and commonly held perceptions: the sound of a funny voice or a portrait in the mind’s eye?

Fragile, computer illiterate little old lady? Not on your ninny, sweetheart!

This story reflects a personal experience encountered by the writer during the past fortnight.

Noticing more money than expected in her every day savings account the war widow checked her internet banking system. One regular fortnightly bank authority payment had been returned to her account with a comment. The message stated, “Payment rejected. Payments Service is temporarily unavailable. Please try again later.” Alarmed, the woman hears her forceful strangled sounding voice muttering aloud, “what does this mean?” Carefully checking account numbers on her internet banking screen, there is nothing different in the numbers. She notes the transaction occurs successfully on a fortnightly basis over the previous 15 months.

With spasmodic dysphonia and cervical dystonia, the woman has difficulty using the telephone keypad and speaking. Continuing to make approximately six to 10 calls plus several emails per day to her own banking institution and the company whose electronic system is suddenly rejecting payment, she persists in her efforts to resolve the situation. Alas, both institutions continually state the problem remains with the other.

Physical ability rapidly spiraling down, the woman’s effort to speak coupled with the sharp increase in pain from spasming neck, shoulder, arm, hand and vocal cord muscles result in her need to manage the situation some other way. Requesting technical support people at both institutions speak to each other on her behalf, the woman hears nothing for several days. Time to initiate a fresh approach!

Following a visit to the banking institution holding the woman’s personal accounts, further telephone calls and emails are forwarded on her behalf by very supportive staff. The situation continues with no resolution. Some major technical system difficulty within the company constantly rejects the payment. More telephone calls by several people to that company confirm their belief the problem is with either the woman herself or with her banking institution. Then, as is frequently experienced by people with dystonia, a bitter sweet outcome to a problem situation!

One very supportive bank employee suggests reversing two initial numbers of the BSB. The numbers appear to belong to an outdated financial transaction system. Achieving success by reversing the two numbers, transaction is accepted!

Feeling elated, the woman makes a courtesy call to the other company. Now two weeks since initial contact, she tells the young woman answering the phone of the result. Checking their accounts the young woman returns to the telephone stating the money has not been received. Suggesting the transaction may not show until the next working day, the woman is abruptly told reversal of the numbers would result in the money going somewhere other than to one of their accounts. The younger woman infers something to the effect that the problem is a lack of knowledge and ability to use internet banking because it is not happening to other customers. After a long pause she makes further statements referring to the woman’s inability to speak or to be understood. One suggestion is rather rudely made to take someone who can speak properly to her bank and sort it out.

Unable to initiate any speech in response, the woman bursts into tears resulting from two weeks of frustration, distress and fatigue. Other very hurtful and derogatory remarks are made both by the younger woman and another who also telephones the older woman back. Evidently they consider they are spending too much time on a problem situation that is not their responsibility.

When informed of the war widow’s great distress, staff at the banking institution holding her accounts are very supportive, reassuring and helpful. Unable to speak without great effort, the woman now ponders her options.

It seems the sound of an ageing lady with a funny voice and pain from a body twisted with muscle spasms when speaking on the telephone leads some to assume she is computer illiterate, lacks technical savvy, is unreliable with her problem solving skills and is not to be taken seriously. Well, we will see.

Disability Advocacy and Information Service Inc, and Human Rights and Equal Opportunity Commission are two avenues of support and action that may be available to people experiencing discrimination or social injustice. When approaching either of these services, referrals to other appropriate avenues of address are offered.

Those of us with spasmodic dysphonia may not have a voice but we can still roar. When our bodies are painful and twisted we may not be the first cab off the rank but just watch us run with the wolves. We are not God’s police, it is true. However, we are not damned whores either.

Sue Bayliss. Cairns, Australia.