Social barriers for the hard of hearing

Hi, my name is Jo. I am part of the Dignity Project team. I experience hearing loss and this blog post is about the social/attitudinal barriers I encounter and some of the tips and tricks I’ve learnt along the way.

Hearing loss is an invisible disability that affects more than 5% of the international population and one in six Australians – a figure which is expected to rise to one in four by 2050.  Of the over 3.55 million Australians who are living with hearing loss, only one in five people have a hearing device, and nearly half are working age (16-64 years).  Employment rates for people with hearing loss are 20.5% lower for men and 16.5% lower for women.  Further, a person with untreated hearing loss is estimated to earn an average of $10k less than people with no hearing loss or treated hearing loss.  The cost to the economy is a staggering $11.75b annually in lost productivity and other impacts. (Source: Hearing Care Industry Association and the World Health Organisation).

Aside from what the statistics tell us about hearing loss, it does not tell us about the range of obstacles and social/attitudinal barriers people who are hard of hearing face. In my daily life I have experienced many challenges, some of which are related to my impairment and others are caused by the inaccessibility of the world around me. It has been challenging to adapt in order to live my life fully and achieve all my dreams and goals.

I experience difficulty when having conversations, whether face to face, online or using the telephone. Noisy, low lit environments, where there are multiple conversations happening at once present challenges. Whilst I hear much better with my hearing aids, I use lipreading and body language to follow along with conversation. There have been many times when I have been in groups and found myself feeling excluded and isolated. In some cases, people will address the person I am with to relay or repeat something to me, rather than taking to me directly. They sometimes slow their speech or talk with animation – which in-fact makes it even harder for me to understand. Nowadays, I choose wisely when and where I go out and the company I keep. I choose friends who are respectful, and who I know will include me in conversation. As an example, when out with others, my husband Justin consciously and as a habit, will make sure I am following and included. He deliberately stops a conversation and fills me in if he notices that I am lost. When in a car, plane or especially in the dark, he will also assist me. This is a small, yet considerate gesture that makes me feel valued and supported.

An attitudinal barrier I encounter, I have been told (when I have had someone with me), is that shop assistants often make a face or mock me when I do not respond to them. When I am aware that they are communicating with me, I politely identify that I am hearing impaired. Most of the time, after being upfront with them, I find that the experience becomes a positive one. I now make a point of making eye contact and saying hello to staff as soon as I enter any premises. Upon return, I have found that people remember me, and are very friendly and will actively seek me out to chat. I have made many friends in this way.

Luckily for other forms of communication, technology has progressed, and I have access to instant communication via the written word through email, mobile phone text messaging, social media applications with direct messaging and face to face in real time using video conferencing. Accessible and adaptive technologies have played a huge role in my life and career. When I got my first job, my employer bought me one of the very first mobile phones with SMS capabilities. I was so excited; I could not wait to show my family. I remember at the time; my dad organised the whole family to get mobile phones so we could communicate via text messaging. It was life changing. A decade or so later, we had a similar experience when I got my first Apple iPhone and discovered FaceTime.

Despite the range of communication technologies available, I frequently come across challenges when the only way to contact someone is via the spoken word on a telephone – this is particularly so for emergency services, making appointments and contacting large organisations. In the case where email is not an option (or my email has been ignored) or when I need immediate assistance, I have to rely on others to communicate on my behalf. A recent example was when I was involved in a serious car accident. The other driver left me at the scene. They later told emergency services that they thought I could not speak English due to the sound of my voice. Because I was in need of urgent assistance, I contacted my husband at work. He called police, ambulance and a tow truck and then came to the scene as quickly as possible. If I had not had the ability to contact my husband, I’m not sure what I would have done. I have since discovered the Internet Relay or SMS Relay Service (https://deafsociety.org.au/community_programs/page/emergency_information).

Public transport, PA announcements, television, radio and film also present challenges for the hearing impaired. I am unable to decipher dialogue with these communication mediums and that can be very frustrating and isolating. The way I choose to get around this is to be proactive rather than reactive. When checking in for a flight, I go to the service desk, let them know I am hearing impaired and ask them to let me know when my flight is called for boarding. I do the same on a bus, where I always sit close to the driver and ask them to let me know when I am at my destination (if it is unfamiliar).

For TV and DVD, I use Closed Captions (CC) – Bluetooth technology is also fantastic and streams directly to hearing devices and headphones. These are life changing technologies that improved the quality of my life.  Whilst I can hear most music if I increase volume or wear Bluetooth devices, radio programming is not accessible. Cinema, film and video has a long way to go in terms of accessibility, despite the technology being widely available. Many cinemas are starting to build in accessibility, and in my area, these include many Art House or small independent cinemas, including HOTA on the Gold Coast. Larger cinemas often have accessibility devices but only for certain large screenings of major films. Because I enjoy motion picture, I started looking out for foreign language films and festivals. These have English captions, and this is where my love of French language film blossomed.  Online/educational video also has a long way to go to be accessible. Some organisations demand that closed captions are included in all video content, whereas others have not yet reached this point. I will always try to do my best using headphones in this case, but have started requesting closed captions out of principle, and the more of us that agitate for this change the better.

Coronavirus has brought up a whole new set of issues for the hearing impaired, me included. The wearing of facemasks means I am not able to rely upon my best form of understanding, which is lipreading. Last week I had to go to an alternate dentist, as my regular dentist was not working (due to Coronavirus shutting things down). I mentioned my hearing impairment, however, with his mask on, the dentist, who was not familiar with me, was talking about the procedure he was going to carry out. I reminded him that I was hearing impaired and asked if he could please move his mask down so I could see his face, however, he kept talking with his mask on. This was very frustrating, and I felt a lack of dignity in that moment.

Navigating the workplace has been an interesting experience for me. I have worked hard and have been rewarded with long term employment for much of my career. I recently left a job where I did not feel supported which was a hard decision to make. I found looking for work very challenging.  Firstly, I was not sure if it was appropriate to disclose my disability on the job application.  At first, I felt it was best to be honest about my hearing impairment, however, I got no interviews. I started to exclude this disclosure and that is when interviews started to roll in. Most organisations will call to notify of an interview; however, this is an area where I struggle. Through experience, I learned to put (SMS/email only) on applications. If they did call, I let them know about my hearing impairment and ask them to follow up with an email. To reduce stress before and during an interview, I was always upfront beforehand and made sure I have organised any necessary adjustments/supports (if required). I now know that it is also possible to have a support person in an interview, if you choose. JobAccess (https://www.jobaccess.gov.au) is an excellent organisation that provides support for individuals and employers, based on your unique needs. They can come into the business and conduct a needs analysis, provide training or assist with the cost of accessible and adaptive equipment and technologies. Adjustments to work duties for the hearing impaired may include the use of email, SMS or video calls as an accepted, if not preferred, method for communication. Phones with volume control/flashing light may also help, as will noise cancelling headphones. In my workplace we have video phones and also a ‘buddy’ system, with help provided, particularly in emergency situations when there is PA announcement, alarm sounding or if we need to evacuate.

Face to face meetings, training seminars and professional development is an area, where in the past, I have been excluded and even left out entirely. A great way to overcome this is to have systems in place where you receive printed/digital copies of materials, agendas, handouts or PowerPoint slides ahead of time, to familiarise yourself beforehand, in addition to a follow up with meeting minutes, or a quick rehash afterwards with the host or a support person.  I always try to position myself closest to the speaker, however technology such as voice to text apps, an example of which is Google Live Transcribe (Android) or Hearing Helper (Apple) can prove invaluable.  It is also possible to save a copy of the transcript to read later. For online meetings, I recommend Microsoft TEAMS or Google Meet, which have built in live captioning.

Finally, on a more personal level, I have learned that it is important to do what you can to make yourself feel good. If you feel good about yourself, this often radiates outward, making your experiences more positive. I keep abreast of the most recent technology and support networks that can help make my life easier.  I keep active – regular exercise boosts self-esteem and self-worth, not to mention the other health benefits. I eat well and get good quality sleep; active listening can make you very tired or exhausted at times. I make time for my hobbies and interests, especially with others who are supportive and whose company I enjoy. Importantly, I keep in touch with my social network, and ask for help when I need it.