Celia Hensman tells us how she has spent her life fighting against how people view her, her fight for life, and how she pushes herself every day to do everything she can in her power to change the lives of other disabled people.
How do you identify as disabled, and what does it mean to you?
I identify as a disabled woman with multiple disabilities including Loeys-Dietz Syndrome, Marfans, and POTS. Most significantly, I live with a permanent central line in my chest through which I receive daily blood infusions and complete artificial nutrition. I have never known life without being disabled.
To me, being disabled is my power, it is my driver, it is my identity. It makes me who I am and where I am today, and I am proud of it. I wouldn’t be who I am or where I am today without this element of who I am, so to me my disability has in a way been a gift to me (despite all the bad bits!) that I want to utilise as much as possible. I am who I am because of my disability and not in spite of it, which I think is an important use of language we must all remember when discussing disabled entrepreneurs!
Tell us a little about your business.
The Disability Policy Centre is the first think tank of its kind in the United Kingdom. It is disabled-led, and dedicated to the advancement and development of policy, ensuring that accessibility is at the heart of conversation, consultation, and legislation.
We work closely with government, locally and nationally, along with policy leaders, organisations and people carrying forward the banner of disability championing.
The Disability Policy Centre is committed to the improvement of public services and policy reform, finding, and implementing the practical solutions that change the lives of disabled people for good, from education to sport to employment to representation and more.
With 1 in 5 people in the UK identifying as disabled, and this number rising exponentially, our voices have for too long been under-represented. We want this to change. We develop the policy solutions that break down barriers for disabled people in every aspect of our society, collaborating with others to lead the thinking to ensure that nobody is held back from achieving their potential.
We had a very exciting launch as an organisation on The International Day of People with Disabilities 2021. Our directors were delighted to be invited to 10 Downing Street to take part in a roundtable with the Minister for Disabled People, Health & Work. We discussed what measures need to be taken to improve the lives of disabled people regarding representation, employment, and day-to-day life. As we approach our anniversary, we are so delighted that our team has grown so much into an incredible force to be reckoned with!
Why did you start the business? Share your story so far.
There are so many reasons as to why we started The Disability Policy Centre, but I suppose these are the key highlights.
As a disabled women since birth, I have spent my entire life fighting against how people view me, the challenges I have faced which could have been avoided, the systems I have become stuck in and my inability to always receive the help that I need through no fault of my own. I want to make sure this isn’t a trend that continues into the future. I fundamentally believe that practical solutions and the implementation and amendment of policy is at the heart of driving forward this change.
It all began when Chloe Schendel-Wilson and I were working on a campaign to increase disabled representation in local and national government, where disabled people are shockingly absent from conversation. We became increasingly more aware of the lack of involvement of disabled people in policy and legislative discussions and decided this needed to change in order to shift conversation and increase the pace of change. The Disability Policy Centre was born, with the fundamental aim to ensure that accessibility and disability is at the heart of legislation, breaking down barriers and ensuring that we live in a society where nobody is ever held back from achieving their potential.
What do you see as the main challenges facing your business and its continued operation or growth?
The main challenges facing The Disability Policy Centre and its continued operation and growth I suppose links to the later question of perceptions, how disabled people are viewed and our capability, a widely outdated stereotype that is throwing up barriers for disabled people across society but is unfortunately so innately entrenched within societal views.
What can we do to encourage more disabled entrepreneurs to start businesses – what is holding them back and what can we all do to help change that?
I wish I could shout it from the rooftops encouraging disabled entrepreneurs to commit to starting their own businesses.
To encourage more people I would say, have faith in your talents and abilities and the intent in what you are trying to do. I see it time and time again that disabled people hold themselves back from taking the leap of faith because of doubting themselves and their abilities, because of the ableist perceptions that society has put on us, we internalise this and begin to doubt ourselves. Yes, it is hard work, but it is so worthwhile and rewarding, prove what they think of you wrong and show the world how powerful we can be.
What do you consider your greatest achievement or the proudest moment in your life so far?
Good question! My proudest moment in my life is probably the fact that I am still here today, the fact that every day I fight so hard to keep myself alive, and more than that, that every day I am pushing myself to do everything I can in my power to change the lives of other disabled people. I am proud of myself that despite of the odds and my physical health I am still here today, and what’s more I have a story to tell!
If there was one thing you could change about peoples’ perception of disability what would it be and why?
Unfortunately, there is an extensive plethora of misconceptions relating to disabled people, but my number one bee in my bonnet about perception of disability is the misconception of the capabilities of disabled people: that disabled people are expensive to society, a drain on resources, unable to commit, underachieving, incapable, always reliant on others, uneducated, untalented … I could go on and on. There is such a negative bubble of image around disabled people and how we are perceived that disability equates in inability, and this is simply the farthest thing from the truth.
Disabled people are actually some of the most talented and unique people, we over-index with empathy, determination, reliance, resilience, creativity and the ability to think outside of the box. Your view that we have nothing to offer to society and to each other is simply the furthest thing from the truth. There must be more recognition of the talents and capabilities of disabled people. Sure, we can’t necessarily do things the standard way, but that doesn’t me we can’t do anything. This perception of disability is incredibly damaging and is creating and sustaining the barriers for disabled people which we see around us today.
Who or what inspires you?
I am inspired each and every single today to ensure that the DPC team and I find and implement the practical solutions that change the lives of disabled people for good.
I have been through a number of negative or unnecessary experiences throughout my life that I am determined to see eradicated, so that others in the future do not have to go through the same things.
Not only do I draw upon my own experiences, but I am inspired everyday by the people, organisations, and communities which I meet, that share their own stories and experiences and the work that they are doing. It drives me and pushes me harder and faster knowing the extent of the problems in our society and hearing how the same mistakes are being repeated over and over again.
Do you have a recommendation for a book or a podcast which has helped you along your journey?
There are so many incredible podcasts out there such as Disabled and Proud with Brooke Millhouse and Safe Space with Gavin Clarke that are well worth a listen. Both of these podcasts feature the stories and words of encouragement from disabled individuals, getting down into the nitty gritty and fostering an environment of openness and honesty into the history of disability and finding pride in your identity.