Deafblind Awareness Week 2018 & Reflection on the Past Year

The last week in June was Deafblind Awareness Week. For the last year, I have been a very active volunteer with the local deafblind community here in Adelaide. Our main event for this year’s Deafblind Awareness Week was a panel discussion, with three panellists from the deafblind community (including myself), plus our MC was also deafblind. This is the first event of its kind that we have organised in SA, completely planned and run by the deafblind community. The Royal Society for the Blind were very supportive and kindly provided the use of one of their rooms for the event. We invited people from a wide range of service providers to come and hear our stories, and hopefully gain a better understanding of some of the challenges we face and how they can support us.

 

I was very involved in promoting this event, as I usually am with our community events. This led to my being asked to be interviewed on Vision Australia Radio about Deafblind Awareness Week, and about our discussion panel. This required being interviewed on the phone. These days the only way I can manage phonecalls is through the National Relay Service. I don’t think the radio host had ever used this method of communication before, and I hadn’t used it in this setting, so I think it was a learning experience for both of us. Even though it was going to be a challenge, I wanted to go ahead with this. Since the discussion was about deafblind awareness, and the NRS is a valuable method of communication for many of us, I wanted to give listeners of the station a chance to see how this worked.

 

There’s a couple of reasons why I haven’t posted about this closer to Deafblind Awareness Week. Partly, I’ve just been ridiculously busy and quite overwhelmed, but I’ll save some of that for other posts. Mostly, it’s been hard to decide what to write, as I’ve been doing a lot of reflecting on the time since the last Deafblind Awareness Week, and how much has changed for me since then.

 

Even though we didn’t start promoting the event as early as we would have liked, we were booked out within a few days. We received quite a bit of positive feedback from the audience, and are looking forward to running more events like this in the future. We had prepared quite a lot of topics to discuss, and didn’t get through a lot of it, so we still have plenty more to share about many different aspects of life as deafblind people.

 

My own experience of deafblindness is not easy to explain. I have always had very low vision, but only started having issues with my hearing around the age of 18. I have already shared some of my rather complex story of hearing loss in a post on here last year, so I won’t repeat what I’ve already said. However, I haven’t talked about it much since then, and there is a big reason for that.

 

A bit over a year ago, I realised that I was needing people to repeat what they were saying more than usual. My hearing had been stable for quite some time, and I had started to hope it was something I wouldn’t have to worry about too much any more. I started feeling disorientated and struggling to tell the directions of sounds, and missing other small details. At first, I thought my ears were blocked because I had a cold, even though I don’t usually experience blocked ears with a cold. When the cold went away, these issues remained. My gp confirmed that there was no ear infection, not that I’d thought there would be. I visited my audiologist to get my hearing tested. The left hearing aid needed turning up, but although the right ear had lost some hearing, it wasn’t quite bad enough for a hearing aid. The problems with communication had started in noisy environments, but gradually the settings I struggled in increased. When I went for a follow-up test, perhaps a couple of months later, I definitely needed a second hearing aid.

 

At this point, there was some talk of the audiologist sending me to hospital to try to get some answers about the cause, but I was reluctant to do this. My gp, thinking of the previous diagnosis of conversion disorder, made an appointment for me to see my psychiatrist. After talking through everything that had been going on in my life, my psychiatrist didn’t seem to completely buy the conversion disorder diagnosis. He’s not ruling it out completely, but he doesn’t seem to feel it quite fits, and I’m not sure I do either. Apparently the polite version of the combined opinion of everyone involved in my healthcare is, “no one has a bloody clue,” and everyone is back to scratching their heads in confusion.

 

It’s been a rough year, and my hearing has continued to deteriorate. I put off going for another hearing test until I was talked into it because I needed up-to-date records to organise a disability access plan for uni (which I’ll talk more about in another post). I expected bad results, but I guess they were worse than I expected. I am now profoundly deaf, and pretty much at the limit of what can be helped with hearing aids. There is no situation where I don’t constantly struggle with communication. I feel like after the last audiology appointment, everyone is quietly waiting for me to lose the rest of my hearing.

 

I have been seeking out opportunities to learn new ways to communicate, and have learned some valuable new skills through Able Australia, an organisation that if very experienced in working with deafblind people. I am continuing to work on building stronger connections with the local deafblind community. I know I am not alone in my experiences, and will keep advocating for more support for myself and others.

 

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Communication-Friendly Eateries: my accessibility project, primarily for the deafblind community

Last October I was fortunate enough to win a youth leadership scholarship from Deaf Can:Do, the Royal South Australian Deaf Society. I was awarded this scholarship to help me to undertake a project to create a directory of cafes and restaurants that have good accessibility for those in the deafblind community. While my focus is on deafblind accessibility, I will also be sharing this resource with the Deaf community and the blind community. If there is anyone on the autism spectrum, or with any other sensory access needs, who is wondering if this resource could be helpful, please feel free to get in touch. I will provide ways to contact me at the end of this post.

In the middle of last year, when I took on my volunteer role with the deafblind community, one of the challenges that immediately presented itself was the issue of finding meeting places that were accessible for all of us. Given that the term “deafblind” refers to anyone with a combination of vision and hearing loss, our community has quite a wide range of access requirements. When this scholarship was advertised, it seemed like a perfect opportunity to address these issues.

Unfortunately, the project has been off to a slower start than I had originally hoped. This is partly due to the fact that I took on a couple of projects that started at around the same time as each other. In some ways, parts of the project have also been a bit more complex than I fully understood when I started out. I don’t see this as a major problem, but it is definitely a learning experience.

So far, this project has definitely had its challenges, but I believe that all of these can be worked through. When I started out, I thought I knew my own access needs quite well, and that I just needed to make enquiries into the access needs of others in the community. During this time, my hearing has been deteriorating, and so my needs have been changing. As I have had time to get to know more members of the deafblind community, I have also gained a better understanding of just how wide the range of access requirements actually is. To help me to get a clearer picture of what it would take for a café or restaurant to meet as many of these needs as possible, I have created a survey, which I am trying to circulate to as much of the community as I can reach.

Please click here to take my survey.

Although the focus is on the needs of deafblind people, I would also appreciate responses from people who are either Deaf/hard of hearing or blind/vision impaired. If you wish to fill out the survey from the perspective of a professional or a parent/caregiver, it would be preferable if you have some awareness of the specific needs of deafblind people. I really want this project to address the access requirements of as many people as possible.

As well as the main goal of putting together a directory of places that are accessible, I intend this project to be an opportunity for community education. I am hoping this will be an opportunity to raise awareness among business owners about what they can do to make their venues more accessible and how to be adaptable with their communication. If you’re reading this and you own or work in a café or restaurant and want to know more about how to make your venue more deafblind friendly, I would love to hear from you.

Once I have a detailed picture of the community’s needs, I will be traveling around Adelaide and surrounding suburbs, assessing cafes and restaurants to see which ones meet as many of these needs as possible. I hope that some of those that are less accessible will be open to making improvements. I am also hoping to collaborate with some disability organisations later on in the project to arrange training for venue owners and staff in how to provide assistance to deafblind customers. A couple of examples of this would be some basic Auslan training, and how to guide someone to a table.

For anyone interested in following the progress of this project, I have created a Facebook page. This will be a place for me to post updates and seek community input. This is also somewhere that I can mention eateries that don’t quite make the final directory, but which stand out in some way. I hope this will establish positive connections with these businesses, and be an opportunity for education on where they could improve in the future. Anyone is welcome to follow this page. I am passionate about community education, and I welcome questions and feedback.

To keep up-to-date with the project’s progress, or to send me messages on Facebook about anything relating to the project, please visit the

Communication-Friendly Eateries Facebook page

To send me an email,

jasper.cleland@gmail.com