Community Corner

This blog was first published on The Dignity Project in February 2021.

The Dignity Project team sat down with Dr Gary Allen, CEO of Enabled.vip to discuss employment for people with disability.

You are a very passionate spokesperson for equity, diversity and advocating for equal opportunities in employment. Do you have any early experiences that shaped your drive to help others and work in this area?

I am a self-confessed workaholic and I have realised how much self-satisfaction and affirmation I get from operating my for-profit company. Having looked at uses of the Patreon platform, I have realised how it could be used to monetise a hobby or craft. As my own disability has progressed, I have been thinking of how I can continue to do gig-based work after I’ve had to give ‘normal’ work away. So, from that perspective, I have a very personal insight into how somebody who lives with a disability could continue to contribute and hopefully make a little money.

I am by predilection, a progressive, consequently the exclusion/prejudice/discrimination against people who live with a disability boils my blood. My social media work for AHRECS (www.ahrecs.com) has shown me how powerful and audience-building daily posts can be. It occurred to me I should be using my platform and experience to make a positive contribution. To be bleak for a second, I am very conscious that there will come a time when I will be less able to advocate for myself. So, building a platform like Enabled.vip is exactly the kind of thing I might hope will be around down the track.

Can you tell us about your early-stage start-up Enabled.vip and where the idea for your business platform was born?

The initial impetus for Enabled.vip came from myself and a friend attending a couple of events focused upon employment and disability. It strikes me that enterprise established via a sheltered workshop model may not always utilise the expertise that people with disabilities have, and that in 2021, there is a range of employment models that may better support this diversity in capability offering.

What services does Enabled.vip offer for people with disability and potential employers?

The services the platform will offer will include:

1. Mentoring
2. An internal discussion board/peer support board
3. A resource library and newsroom
4. Webinars and online events
5. Micro-courses (linked to Griffith University)
6. A blog and quarterly newsletter
7. An online marketplace (The BAZAAR) linked to Fiverr.com

Our services will be billable to the NDIS as well as payable by other means for those people without an NDIS plan.

Has the coronavirus pandemic in Australia, and particularly in South East Queensland, impacted the employment prospects for people with disabilities – we are interested in both the good and bad aspects of this. For example, one of the good aspects may be working remotely from home, in one’s own environment with access to inclusive communication technologies such as Microsoft Teams, not needing to commute to work and flexible working conditions/hours.

This is probably one of the few times a person can genuinely say this, COVID-19 has actually been helpful for Enabled.vip. One of the things the pandemic and lockdowns have shown, is working from home and remote connections work. This is precisely the type of work that would come from many of the Enabled.vip member endeavours.

What it did do, is for a time, it was almost impossible to find funding for something other than helping existing businesses survive and evolve for the new economic context. There are at least now more opportunities for social enterprises.

The sad reality is, employing someone who is living with a disability can be regarded as a luxury and the first thing to be cut when budgets are tight. The hope is, as more disability endeavours are set up, it will be recognised that the disability community have attractive and very useful skills/experience/knowledge to share.

Are you affiliated with the NDIS or Job Access? In what way?

We aren’t currently, but we hope to soon be NDIA registered. In the meantime, this might mean that we can only work with people who are plan managed, rather than agency or self-managed. Once the web developer has finished coding the platform, we will be writing to all Australian plan managers, so that hopefully we will be able to accommodate people who are plan managed. We have drafted the necessary policies and key projects are planned to support our NDIA registration.

What are your goals for scaling the business and future expansion?

World domination? In all seriousness, Enabled.vip is based on four convictions.

1. A person being able to start, operate and grow a venture is incredibly affirming, is a boost to dignity and self-worth and enhances their community connections.
2. With mentoring, peer support and resourcing most people have capacity to pursue their potential.
3. There is value in nurturing a community of practice here.
4. For our typical member, even a modest extra monthly income could be a game changer.

Future expansion... One – Going national. Two – An Enabled.vip smartphone app. Three – Supporting a group to establish a sister company in another country.

What does dignity mean to you?

Dignity means looking at yourself in the mirror and recognising the value of the person you see. It also means you know that other people recognise your value.

Do you have a specific incident relating to dignity in employment that you would like to share, or feel others would resonate with and learn from?

When I first went to my job interview at Griffith University, I wasn’t then in a wheelchair, but did walk with a stick. When I went into the interview room, I consciously left the stick outside the door. My apprehension was the interview panel would judge me on the basis of the stick. In the weeks and months that followed, I realised it was my knowledge/experience/approach the panel was interested in and that my physical disabilities were irrelevant. Within the MS community I have heard plenty of horror stories of people losing their jobs or facing discrimination because of their illness and disability. I firmly believe the culture of an organisation makes a big difference. Griffith University has an established commitment to inclusivity. Sadly, the same is not true for at least some businesses/employers.

How do you work to advocate for dignity for yourself and others, particularly through Enabled.vip and as a business leader, researcher and academic?

Enabled.vip will definitely be a great opportunity to advocate on behalf of Australians who live with a disability and have a dream of establishing some form of enterprise. I have done a bit of advocating as a former ambassador for MS Queensland. I have helped with the process of fellow MSers reaching out to their local member of parliament.

How has your journey with disability shaped the person you have become today?

This is a very interesting question. Prior to my first severe MS exacerbation I was on a particular career path. To be honest, I don’t know that would make the world a better place. My MS forced a change in my thinking and where I invested my passion and energy. If you will forgive the conceit, I firmly believe Enabled.vip could improve the lives of members and their families, as well as change how people think about the contribution Australians who live with a disability can make to society.

What work needs to be done to ensure everybody is treated equally and equitably in all aspects of life, particularly employment, hiring practises, workplace adjustments and entrepreneurship?

I am a firm believer in the importance of education to change a person’s worldview. Part of this education is seeing the contribution people who live with a disability can make with a little support.

Do you have any advice you would like to share with our readers in terms of seeking employment or starting their own business or side hustle?

Don’t hide your disability or be nervous about the person you are. Some small-minded people might prejudge or discriminate against you, but it’s best to know that up front, rather than once you are settled into a job. I think you can learn a lot about people observing how they treat vulnerable members of our community. In terms of a business, find a network to connect to and find sources of information/support. This is precisely what Enabled.vip aims to do.

Find out more:

Dr Gary Allen

Gary.allen@enabled.vip

0419 653 028

www.enabled.vip

This blog post was first published on The Dignity Project in February 2021.

Elijah Palmer, Gold Coast Young Citizen of the Year Winner (2021), up-and-coming and inspiring wheelchair athlete.

Born with various physical and intellectual challenges, including (but not limited to): spina bifida, intellectual impairment, autism, lower limb paralysis, in addition to enduring 30-40 operations from birth to get him to his functioning abilities today, Elijah does not let challenges define or stop him. Instead, he chooses to live by the mantra … ‘Never give up’. Elijah’s bravery and determination not to let anything get him down or stop him achieving his dreams and goals is especially humbling, particularly after the challenges many of us endured in 2020.

Elijah has strong views on dignity and what it means to him – and despite his disability, he is very independent, capable and can do almost everything for himself. His pet hate… when people don’t talk to him directly and talk to his companion instead.

Elijah lives and breathes sport, and participating, has brought him so many benefits. In particular, sport has helped Elijah shape his identity as a fighter and a winner, as well as connecting him to the community. From a young age, he got involved early by trying out a variety of different activities. His first teacher, Miss Sally at Mudgeeraba State Special School introduced him to swimming, and since then he has become a strong and keen swimmer. This can provide a bit of surprise for patrons at pools, who would witness him leap out of his wheelchair and dive into the pool.

After trying many other sports, Elijah found his niche in wheelchair racing. Under the watchful eye of his coach and support worker Garth Plank from Mentor 4 Me, a disability support group – Elijah has gone from strength to strength. Garth is a former elite junior athlete who has represented Australia and has coached a variety of sports over the last 20 years, and it is with this experience that he has been able to assist Elijah to create and reach new goals every year.

Elijah started training in his wheelchair, doing sprints with progression to longer distances. His first public event was the 5km race at the 2014 Gold Coast Marathon. Elijah became addicted to the cheers and public adoration and used this as fuel to fan the flames of his training regime. The next year at age 13, he competed in his first wheelchair event in the 4km Junior Dash at the Gold Coast marathon in his day chair. For this event Elijah trained once every fortnight for 8 weeks. The following year again, Elijah did the Junior dash and bettered his time by 14 minutes. This was after training once a week for 6 months. Again, in his day chair.

A little over 2 years ago Elijah received his first race chair for Christmas, which was sourced heavily discounted, from Melbourne businessman Michael De Santo. Michael De Santo also generously donated wheelchair rollers, which convert his racing wheelchair into a stationary wheelchair.

Elijah has many friends, mentors and idols who he looks up too, including, Paralympian Kurt Fearnley, who he has met several times at events, including the 2018 Gold Coast Commonwealth Games. Garth has also connected him with local Gold Coast Commonwealth Games Representative, Sara-Ashlee Tait, who has assisted in mentoring Elijah and providing coaching tips.

From this point, the pair embarked on a new challenge, which was to learn how to manoeuvre and use the new racing chair. Elijah had only been in a day chair for 2 years, so he had limited muscle through his core and upper body, leading to months of troubleshooting to work out how Elijah was actually going to be able to push in the chair, particularly since Elijah’s hands face inward on a right angle. Elijah and Garth had to try dozens of strategies to work out what to use as gloves and what technique might work to be able to get him around the track. To make this task easier, the pair recently relocated their training to Griffith University, one of the only gyms willing to accept him. Being welcomed so warmly has been a turning point, which has led to Ellie Camilleri from ‘4 Fitz Sake’ and many others. Elijah is now being recognised around the gym and is excited to be connecting with other athletes.

As for the future, Elijah has many goals. In 2021, Garth in conjunction with Ignition Athletics Club, will start a program to facilitate wheelchair racing and para-athletics for children and adults in the Gold Coast and SE Qld region, and Elijah is keen to assist other young people to have the same opportunities that he has. As for sporting goals, Elijah was due to be competing at the wheelchair racing event Summer Down Under at the Australian Institute of Sport (A.I.S) this month. Here athletes will be competing to qualify for the 2021 Paralympic Games in Tokyo. This event caters for both junior and senior wheelchair athletes, and Elijah will be competing in at least 7 races over the 3 days, with goals to set multiple personal bests (PB’s) during the event. There will also be mentoring sessions with elite athletes and coaches for new and junior athletes looking to compete for Australia. At the time of writing, and due to Covid 19, this event has been postponed.

Other goals for this year is to make the Qld Schools team to compete at the Australian Schools Championships and to compete in the 15km wheelchair race at the Gold Coast Marathon.

To follow Elijah’s journey or to find out more, contact:

Claire Burton: claireadeleburton@outlook.com T: 0408 760 872

Garth Plank: mentor4me2@gmail.com

For other inspiring sports for children and young adults with mobility challenges see
“Race Runner” https://m.facebook.com/7NEWSGoldCoast/videos/230164045243516/

This blog was first published on The Dignity Project in September 2020

I was once connected with another “walker”. In the world of spinal cord injury, I am known as a walker. The name is self-explanatory, it means that I have the ability to walk, which isn’t that common among people with spinal cord injuries. I sustained my spinal cord injury through a spinal cord stroke, a rare condition that accounts for about 1% of all strokes. My paralysis is incomplete, and I use a cane or wheelchair to support my mobility, but I also walk independently. Due to the nature of my impairment and how it was acquired, over the years, I have found it challenging to find community connections. Needless to say, when presented with the opportunity to meet another walker, I was excited. They were early on in their journey and I was hopeful that I might find someone I could whinge to about shared experiences but also provide support in the areas where I felt lost on my own journey. Unfortunately, before we could meet, they took their own life. I was devastated, but I understood why.

At my first outpatient appointment after I acquired my impairment, I was told by a specialist that people with spinal cord injuries have the highest rate of suicide in the first five years after injury. That comment was delivered to me as a throwaway line while they were looking at their computer screen. It was not followed with any support resources or individualised mental health planning. It was promptly followed by a discussion on the different approaches to how to “recover” or “rehabilitate” and live a “normal” life. I was left with that conversation hanging in my mind. With every month and year that my impairment remained the same, my life felt less “normal” and the weight of that comment got heavier and heavier.

During those first five years, my fears were as follows; will I die from a stroke today or will I kill myself? The two things felt equally out of my control because by that point, almost everyone around me reacted to me or treated me in ways that supported the idea that my life was now worth less than it was before. Thankfully, at some point in those five years, I became aware of the conditioning that was taking place. I realised that as a human being I had inherent dignity that should not be revoked because of my disability status. When I got to the five-year milestone, I felt relief, like I had accomplished something, dodged something unseen but nevertheless real. The feeling I felt after my “walker” friend committed suicide was one of urgency. I felt that although our journey through disability and impairment was different (as everyone’s is), I could pinpoint where they were in their journey and if I had only got to them in time, maybe I could have shared some of my resistance or helped carry the load.

I guess I’m sharing this experience as a cautionary tale and to reinforce that the way we talk about disability and impairment has a huge impact on the daily lives of the people that live with it, particularly in those crucial early stages when a person acquires an impairment or is born with one. Because of the entrenched deficit perspective towards people with impairments, the pursuit for cures and fixes, often outweighs the important element of coping strategies and adapting to “a new normal”. There are people who have put themselves and their family in financial ruin to pay for medical procedures to try to “recover” only to find themselves in the same condition but in a much worse position in life. If someone had told me or my walker friend that after our injury, our mobility and lifestyle may be different but equally as rich and worthwhile, our journey’s may have started and ended differently. In the end, I have managed to find community connections and mentors and I’ve experienced the significant impact that connecting through shared experience and diagnosis can have.

This week is Spinal Cord Injury Awareness Week and Stroke Week. What are the odds of these two weeks colliding? About the same as having a spinal stroke I imagine! It’s pretty cool to be able to be both part of and advocate for two communities. Awareness weeks are a good reminder that if you haven’t connected with a person in your community yet, do. You never know what you will learn or how much a new connection may mean to someone else. One great way to connect, learn and partake in research is through the Dignity Project.

This blog was first published on the Dignity Project in July 2020

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.