Interview with Shani Dhanda Disability speaker and campaigner

Shani Dhanda from Birmingham is an event manager, disability role model, and campaigner who was born with a genetic condition called Osteogenisis Imperfecta (OI). OI is more commonly known as Brittle Bone Syndrome and is characterised by very fragile bones that break under even the smallest amount of pressure. It is believed that there are currently around 5000 people in the UK living with OI.

In 2017, Shani was interviewed by Channel 4 news about her difficulty in getting job interviews due to her disability. Here, she speaks to Am I Normal about living with this rare condition, and how she went on to become a public speaker and even launch an exclusive discount card for others living with a disability.

Check out Shani's website here. Follow her on Instagram here and on Twitter here.

Hi Shani, Can you start off by telling us a bit about your condition Osteogenesis Imperfecta and how it affects you daily?

Osteogenesis Imperfecta (OI) is a rare genetic condition affecting 1 in 15,000 in the UK. There are many types of OI and I was born with type 3. Living with OI means your bones are liable to break without any trauma. Due to the fragility of my bones, I have a short stature of 3’10 and other medical conditions such as osteoarthritis and scoliosis. I experience a constant degree of pain everyday, even when I won’t have done anything different or strenuous for the pain to occur. When I wake up every morning, I have to survey what hurts and where before I get out of bed to start my day.

I am very lucky in the fact that I have only broken my legs 6 times, my friends with OI have broken their bones over 100 times, and even lost count of the breaks they’ve had. There is no cure for the condition but there are surgery and treatment options to help improve the quality of life.

It’s hard to live in a world that isn’t designed to your needs, it means a lot of planning goes into how I go about my daily life. I’m unable to walk long distances or carry items. Because I have a short stature I need help with things like shopping, chores around the house and I’m unable to use public transport. I drive a specially adapted car and without this I would struggle massively to get to work and go out socially.

What are the biggest misconceptions regarding brittle bone disease?

I think one of the biggest misconceptions about OI is that you can’t achieve or do the same things as other’s without OI, when in actual fact, if there’s something I can’t do I just find an alternative way of doing it or accessing it. It means that I am very good at problem solving and I'm creative, because I have to think outside of the box! Even winter sports have become accessible so I really believe having a ‘can do’ attitude is the best approach when living with such an unpredictable condition.

Do you have any advice for people reading this who might be living with the same condition as yourself?

My advice would be to define your own path in life and don’t think that because of the condition, you are limited in what you can achieve or do. I feel it’s so easy to put barriers up and talk ourselves out of doing something, but that’s not living a full or authentic life. Talk to adults with OI because we do understand what you’re going though as we will have been there ourselves at one point or another. Finally, it is important to make the time to care for your mental as well as physical health too.

You received quite a bit of media attention after you shared your difficult experiences in finding work when mentioning your disability on your CV, and you've spoken about how you were offered job interviews as soon as you omitted this information from your applications. What do you feel could be done to make people with disabilities more welcome in the workplace?

I feel employers should feel more confident about employing disabled people. There are nearly 14 million of us the UK and we want to work and be a contribution to society. Employers are missing out a massive talent pool of quite a unique skillset when you factor in the skills you need, to live with an impairment or condition - resiliency being number one! I think there should be more focus on flexible working and reasonable adjustments, so everyone is given a level playing field to feel comfortable, and an environment to thrive at work.
I know many people also feel awkward around disabled people, especially if they haven’t previously met anyone with an impairment or condition. However, there’s really nothing to feel nervous about, the impairment doesn’t define who a person is and you wouldn’t single out any other feature on an individual and treat them differently because of it.
I love Scope’s End the Awkward campaign, which highlights that a staggering two-thirds of non-disabled people feel awkward around disability.
If you say or do something awkward, it’s not the end of the world. Apologise, laugh it off, but don’t let it finish your conversation. Awkward moments happen all the time, but if you focus on seeing the person, not their impairment, you can’t go far wrong.

You’re now a public speaker - can you tell us about the talks that you deliver and what message you aim to convey?

I’m really passionate about representation and diversity, and last year I realised that as an Asian female with a condition, myself and the communities I identify with (Asian and disabled) were not being represented accurately and haven’t been in the last 30 years I’ve been alive. I was also fed up that decisions for disabled people were being made by non-disabled people and I wanted to make sure that people’s cultural needs were being considered.
So, I decided to become the change I wanted to see in society and started to blog and speak at events. I love meeting new people and really enjoy speaking to different audiences across the country. I speak about my journey so far, adversity, disability in the Asian community and I speak about the extra costs disabled people live with because of their impairment or condition. I’ve even launched a discount card called the Diversability Card, to help alleviate the financial pressure disabled people in the UK are faced with.

Have you seen any positive changes since you spoke out about your personal experiences?

I’ve been really surprised (in a good way) and touched by people’s responses since sharing my personal experiences, I couldn’t believe people from different countries even took the time to personally contact me. Overall everyone has been very supportive because as you can imagine, when sharing your own personal experiences you’re opening up your whole life to judgement in order to be a catalyst for change. I have seen some positive changes but there is still a long way to go, I should not have to fight for a seat at the table because I’m from an ethnic minority background or live with a condition. I’m striving for everyday equality and I won’t stop until as a society we achieve it!

Shani on what 'normal' means to her

‘Normal’ is something that really doesn’t exist in my world and as a label it’s quite boring! I love individuality and celebrating uniqueness, and now with the power of social media, it’s so easy to express yourself and your views than it ever has been before. I love how society is now embracing every type of difference across society and as a result, we have some very inspirational and diverse role models for the next generation.

Further support

If you would like support or information on Brittle Bone Syndrome, follow the link to the Channel 4 support site

Channel 4 support organisations (This link opens in a new window)

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