Jeremy Balfour on growing up disabled: 'You've got to have thick skin'

Self-pity, doubt, and complacency are not words you would associate with Jeremy Balfour. Born with just one arm, and with the remaining appendage shortened at the elbow, and with just two fingers, it’s easy to assume Balfour’s life has been one of enduring hardship. But Balfour will have absolutely none of it.

“I think one of my biggest challenges,” said Balfour, “is a slight over estimation of my abilities. I’ve got to recognise that I need other people’s help sometimes. It’s an inter-relational thing, and I think society as whole needs to learn that we’re not islands. We’re not by ourselves.”

Balfour was born on March 11th, 1967, in the family home in affluent Davidson’s Mains, Edinburgh, on a Saturday afternoon while his brother and sister watched Doctor Who on the TV in an adjacent room. In this idyllic setting, there was no indication of the traumatic birth that was to come - this was a time before pregnancy scans. However, when Balfour was delivered, there was no right arm, and on his shortened left arm were just two fingers which were fused together. Worryingly still, the new arrival wasn’t breathing, and he was rushed by ambulance to the Western General Hospital, a few miles down the road where doctors were able to save his life and became his home for the first six months of his life.

Balfour underwent a variety of medical treatments during his first year of life but one of the most important ones for him was when doctors were able to surgically separate his two fingers. He says it is that operation that has had an enormously positive effect on his independence.

“The cutting of my fingers took place at about six months old,” said Balfour.

“It was one of the earliest operations that they had ever done, at the Princess Margaret Rose, which was the old orthopaedic hospital, and it was a very big risk taken by the surgeons, because I could have lost everything.

“But with the cut, and after being led through physio and occupational therapy, the fingers actually function. It has let me type, write, and feed myself – so it is probably the biggest physical thing that has ever happened to me, because it gave me my freedom.”

From then on, Balfour was raised at home, by his parents Ian and Joyce. The trauma of the birth, and the reality of suddenly caring for a disabled child, was not allowed to affect the manner of Balfour’s upbringing.

“My parents chose to treat me as normally as everyone else,” said Balfour, “and so I went to nursery. Obviously, there were things I couldn’t do – but everything I could do, I was allowed to do. And that was a constant thread throughout all of my schooling and education.

“Particularly my sister. She took a very caring view and looked after me, and spent a lot of time with me, helping. My older brother, as I grew up, spent a lot of time playing sports with me, and my younger brother too.”

Balfour says he has never asked his family how difficult this period may have been for them.

“It’s not been talked about,” said Balfour, “it was very much, ‘this is Jeremy, this is who he is, and we need to get on and do as much as we can within these limitations’.”

The influence of his loving family has had a marked impact on Balfour’s personality and outlook – he bristles at the insinuation people might feel sorry for him and is remarkably more interested in talking about what he was able to do at school, rather than what he couldn’t.

“The way they treated me,” said Balfour, “was they didn’t wrap me in cotton wool. If you watch Call the Midwife, that was the era in which I was born.

“Many children of my generation, and with my sort of disability, were wrapped up in cotton wool or hidden away, or weren’t given the opportunities to do the things I was. I very much see myself, in regard to that generation, as being very fortunate to have a mum and dad who said there’s no point feeling sorry for yourself. There’s no point dwelling on it. You are who you are. Let’s see how much you can do.”

Balfour soon attended the Edinburgh Academy, a private school in the New Town, which he describes as a “predominantly positive time” of his life, filled with “a good bunch of friends” who recognised his disability, but found ways to include him, such as letting him run the touchline during school rugby games. The teachers at his school encouraged him too, and he soon found himself umpiring cricket matches. To this day, Balfour supports Edinburgh Academicals RFC, the off-shoot rugby club of his school, Heart of Midlothian, and begrudgingly admits to supporting England Cricket.

Following school, Balfour followed his great-grandfather, grandfather, father, and uncle into law, which he read at Edinburgh University, before taking up a two-year traineeship at law firm Anderson Strathern. Eventually, he joined the family firm, Balfour & Manson.

“I was able to take notes and write things at both school and university, said Balfour, “and I had a scribe, somebody that I dictated to, both at school and at university, for my exams.”

Balfour also admits this probably helped him get a few more marks during exams, as his spelling was “not great”.

A career in the Baptist church soon beckoned, fulfilling a lifelong devotion to Christianity. It was in the church, as Assistant Minister at Morningside Baptist, which has now become Central, that Balfour met his wife, with whom he has twin daughters. His family and faith form two of the bedrocks of Balfour’s life - and he credits both with making him the man he is today.

Around the time of leaving school, Balfour became involved with another of the great pillars of his life, the Conservative Party. Enamoured by Margaret Thatcher, the teenage Balfour said in a time of very polarised politics between Labour and the Tories, he was drawn to the “very strong leader” due to her foreign and defence policies.

“I do think some of her policies benefitted the country in quite a big way,” said Balfour.

“Labour back in the 1980s, you had to be reasonably left wing to support it, it was the Tony Benn age, and I personally didn’t feel comfortable with some of their policies around nuclear disarmament and some of their foreign affairs, and for me, the policies the Conservatives espoused in the 1980s were the ones closest to me.

“Government is there to help people individuals achieve as much as they can, and there needs to be a safety net there for people, like the NHS, but ultimately, the individual needs to be allowed to achieve what they can.”

Balfour first stood for the Conservative Party in Edinburgh East and Musselburgh in 1999, in the first election of the Scottish Parliament, in which he jokes he came “a very good third”, and then again in 2001, in Central Fife in the General Election – the same constituency Jacob Rees-Mogg famously stood in and waws joined on the campaign trail by his nanny. Balfour jokes that Fifers were disappointed to see he had neither a nanny nor a chauffeur, and came fourth. He was finally elected to office in 2007, to represent the Corstorphine and Murrayfield ward on City of Edinburgh Council, before leaving the church to pursue a career in politics full time – eventually entering the Scottish Parliament in the May 2016 election.

That same year, the UN’s Committee on the Rights of Persons with Disabilities published a report saying austerity policies introduced into welfare and social care by the Conservative governments amounted to “systematic violations” of the rights of people with disabilities. Last year, the University of York published research suggesting the constraints on health and social care spending during this period of austerity have been associated with 57,550 more deaths up to 2014 than would have been expected if funding had stayed at pre-2010 levels.

Having stood by the Conservative Party during the Tory ‘austerity governments’ of David Cameron, Balfour was asked how he squared his conservatism with cutting benefits and funding for disabled people, whom he has spent his life advocating for.

“The perception is, if you are a conservative, you don’t like disabled people,” said Balfour, “that the Conservatives are discriminating against people.

“But I have to say, on a personal level, that has not been my experience, and actually from a policy perspective, I don’t think that’s the experience either. The Conservative Party has policies which are there to help people become who they can be. People too often think the state should do everything for us, and while the state has a role to play, it cannot be the only thing that does it.

“I believe the state can hold people back, and not allow people to be who they truly can be.”

Balfour continued: “The state needs to be there to allow disabled people to develop and to be individuals, but I think too often society thinks ‘let’s just give them benefits rather than try to find them a proper job’, or ‘let’s not let that person do that, because they might hurt themselves, or not be able to’.

“And actually, what we should be saying is go off and be all that you can be. Go and see if you can be a lawyer, or a teacher, or a sportsperson – the Paralympics shows us how much disabled people can do. I worry we patronise disabled people and say, it’s okay, the state will look after you, but what we should be saying is, ‘we’ll look after you to be the best you can be’.”

Going from private school to an ancient university, and then into the family law business, is not a typical upbringing, let alone for a disabled person, and Balfour was asked if his privileged upbringing has coloured his opinion of self-sufficiency and state intervention.

“I think there are disabled people who have come through from all walks of life,” said Balfour, “who haven’t had my advantages, but I think there’s a responsibility for me to open as many doors as I can for disabled people.

“I don’t claim to be a role model. Every person’s experience will be different. But for me, it’s really important that disabled people are given as many opportunities as possible in all the field of society that we can, and we haven’t got there yet, we need to move that forward.”

And Balfour is looking forward, in particular, with his draft proposals for a ‘Disability Commissioner’ bill. The bill would introduce an independent Disability Commissioner for Scotland, whose role would be to promote and safeguard the rights of disabled people and be involved in devolved legislative reform and policy development affecting disabled groups. The commissioner would also report annually to the Scottish Parliament on how disabled people have fared in Scotland over the year. The bill hasn’t yet been drafted, as the results of a previously held consultation are still being analysed.

“A very interesting thing we have here in Scotland,” said Balfour, “is we have lots of laws stopping discrimination, and lots of laws to help promote disability, but the problem is – who is championing disabled people? Who is advocating for them?

“We don’t need lots of new laws, we need a body, an individual, who is going to go and champion disabled people and make sure laws are being put into practise.

“If I’m knocking on a school door, with a child who has a disability, am I getting the right support? Am I getting the help this person needs so they can stay in mainstream education? Are we allowing people to go on into further education and jobs?

“If you look at the unemployment figures, it's getting worse and worse for people with disability at the moment, partly due to a pandemic, but it's also partly because there are still barriers there for people who have disabilities to get into employment.

“We need somebody who can champion, who can challenge politicians, and health services to make changes.”

Balfour says that his advice to a young person born with similar disabilities is to: “Recognise that you have a disability, don’t try to hide it.

“Be upfront with it but then go and try to do all that you want to do, and try different things. I remember my dad saying to the parent of another disabled child, ‘never take no as a final answer’.

“Often you will go out and say to somebody, can I have this, or can I have that? And the initial answer, whether it’s government, local authority, or health board, will be ‘no, you can’t do that’. Don’t take that as your final answer.

“You’ve got to have thick skin and you’ve got to have that ability to go on, and push through and do what you want to do.

“And I think, most importantly, enjoy life. Life is hard sometimes, and it can be really difficult, particularly if you’ve got a certain disability, but continue to go on and do all that you can be and try to do that to the best of your ability.”