Being a parent with a kid in hospital is generally a harrowing experience. When you are deaf it can be doubly so. Certainly if you know Auslan you can get access to interpreters which is a great help, but anyone will tell you getting an interpreter to a hospital, particularly at short notice and with the appropriate skills required, is very difficult. I also wonder what happens when you are unable you sign and when you rely only on lipreading and residual hearing. The lack of communication and obvious seriousness of having a sick child in hospital can make the whole experience scary indeed.
Weekly my middle son must attend hospital for an infusion of an enzyme. This has been happening for over a year now. He must rock up at 8 in the morning and is there for the better part of the day. Ideally my wife and I could request that an interpreter sit with us all day so that we can make sure we know what is happening. Although we are both very assertive, even we know what a strain on resources that would be and so have decided to make do.
Just before Christmas last year our son had a reaction. He began to struggle with breathing and required shots of adrenalin to restore things to normal. Of course the Doctors did not really have time to stop and make sure we could understand everything that was happening. They just had to kick into action and restore our son’s functioning to normal. In such situations there is a flurry of communication. It is impossible to know all that is going on even if you are hearing but it is far worse if you are deaf. While the doctors and nurses are communicating with each other and responding to the crisis all the deaf parents can do, in this case us, is sit back and watch, not knowing anything that is happening. It is very frightening and frustrating.
After this episode our son had to go on a course of steroids and pre-meds. As parents you have to make sure you have all the instructions and doses correct. Get it wrong and it is your child’s health, even their life, that is at risk. My wife and I are lucky that we have strong literacy and English skills. We can make sure everything is written down so that we get things right. However not all people are able to use written English for this purpose. There are people with literacy issues, people from culturally diverse backgrounds and people that perhaps lack the intellectual capacity to understand what is required. Doctors are often in a hurry, speak using complex jargon or have a shocking bedside manner. There is a lot to be desired about how they communicate.
Then you have the bedside consults. All the doctors come around the bed and start discussing your child’s condition. Of course you have no idea what they are all saying. They check blood pressure, prod and probe, stroke their chins, pull their ear lobes, mutter in agreement and nod seriously. The consult may last for 15 to 20 minutes. The deaf parent sits in the background wondering what is going on. Has something changed? Has it got worse? Will treatment change? All of these questions run through the parents head but the answers are not forthcoming. Once the consult is over the head Doctor gives you a reassuring smile, a thumbs up and leaves with his/her entourage. The deaf parent is none the wiser, except to know that things are generally OK.
Next to nothing provided by the hospital is accessible. They have these flash big screen digital televisions on the walls – state of the art stuff. On none of them can you get captions. If you are a deaf parent or a deaf patient access is nil and boredom excruciating. They have DVDs that they show from a central loading point. It’s easy to put the captions on – just in case there are deaf people in the ward. But they never do. Not a thought is given to access.
And then of course you have the hospital volunteers. Lovely valuable people. The life and soul of the hospitals without question. But nearly all of them impossible to lipread. They come in with their well meaning and slightly paternalistic smiles and want to sit down and chat with you to help you through the day. Don’t get m wrong, I really appreciate what they are doing but the effort to communicate with them, coupled with boredom and the difficulties communicating with Doctors makes me want to run and hide. In fact I often do. I see them come through the door and I say to my son, “EEEEEEK the volunteers, I’ll be back soon!” I run for coffee and venture back half an hour later, slowly creeping into the ward, lest the volunteers are still there.
Hospital is not just about getting better. It is one large experience. There is much that can be done to make it better. Perhaps when we have won the battles, that seem trivial in comparison, like captions at the Cinema and on DVDs, we as advocates might like to focus on a bigger issue such as access to the health system for the deaf. Not just interpreting – but the whole system. While I have been active in the Cinema Access Campaign I do wonder if our priorities are wrong. As the saying goes, “…There are bigger fish to fry”