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Archive interview: Margo MacDonald's crusade to die with dignity

In late 2010, Sunday Herald writer Vicky Allan interviewed Margo MacDonald about her crusade to allow the terminally ill to die with dignity. Today, on the day of her death, we republish the article in full.

She's spent her life fighting the establishment - and not even Parkinson's disease can stop Margo MacDonald's crusade to allow the terminally ill to die with dignity.

The journey from one end of the Scottish Parliament's hallway to the other takes place at a snail's pace when you're with Auntie Margo. This is partly because the independent MSP is having trouble walking today.

There have been problems balancing the medication she takes for her Parkinson's disease. She gazes down at her toes and sighs: "My poor foot. It's sore."

Lately, she has bought a mobility trolley, with a bucket to carry one of her bling-style handbags, but it's still in her office awaiting a practice run. Instead, from time to time she steadies herself on the arm of her handsome young American intern or leans against a chair.

But progress is slow, actually, because, as one of her colleagues points out, 67-year-old Margo MacDonald is like a "moth among many lights", her attention fluttering this way and that, drawn by the many people she passes, and frequently she stops for a queenly chat: to Labour's Wendy Alexander, to her SNP pal Christine Grahame, who MacDonald says was once asked if they (her, MacDonald and Mary Scanlon) were Girls Aloud, to which she replied, "No, just Loud Girls," and to the author (and now Herald columnist) David Torrance.

The last of these she pulls up for a phrase he wrote about her in his recent biography of Alex Salmond. "Popular and unmanageable," she quotes afterwards. "Actually people have said a lot worse things about me than that."

It's a good phrase, though, and one that sums her up. In Torrance's book, Salmond: Against The Odds, it is used when relating how, when she stood for election as an independent candidate in 2003, she gained enough votes, as the author points out, to "elect two Margos" - a feat which was achieved after she jumped from the Scottish National Party on the back of a solid push from the leadership.

But it's all the more true of her today. She does her own wonderfully bloody-minded thing. Perhaps only someone as "popular and unmanageable" as she is would attempt to put through anything as ethically challenging as her End of Life bill.

Her proposal, that patients living in Scotland afflicted by progressive degenerative or terminal disease, but who have the mental capacity to make the decision for themselves, should be allowed to seek assistance to die from the medical profession, raises all-too uncomfortable issues for many people.

If an STV poll is to be believed, the public are behind the idea, with 75% in support, but there are plenty of voices, particularly those of religious groups, who are against her, not to mention an organised campaign, Care Not Killing. Despite this week's setback when a Holyrood committee recommended her bill be thrown out by the parliament it is not yet dead in the water.

It will still go to a free vote for MSPs, unguided by any party line. Meanwhile, MacDonald is keen to emphasise she does not want to make a moral prescription for anyone else but she thinks everyone should have the right to decide for themselves.

She says: "I think people who see themselves heading towards a very difficult end should have a right to decide there is no positive part to this end, I'd like to finish my life before I reach that."

Why would she make this her grand, possibly parting, statement? Doesn't it look like she's simply scared witless of the awfulness of her own end and is using her political powers to avoid it?

In fact, MacDonald says, she hadn't considered the whole issue at all till it came up in parliament, when she felt compelled to intervene in the debate, though she was "shaking like a leaf". Before that, she had done little more than joke around the dinner table with family that when it all gets too hard, she'll have "a big bottle of champagne and a packet of whatever drugs it is you need and I'll go out to my favourite Dolly Parton tape."

Even now, she seems to half regard this as a theoretical campaign that has no real bearing on her. The issue of how she will die is never discussed at home, and, she says, if she ever did raise it, her daughters, Zoe and Petra, both in their forties, would have no truck with it: "If I tried to sit them down and say, Listen to Mummy, this is what she'd like you to do, they'd say, 'Off with you.'"

Indeed, she still appears to be at some level of remove, too busy to ponder, too wrapped up in the work that is her obsession. It's strange that for all the people's lives and stories she has become involved in, many of them through making a Panorama documentary about assisted suicide, I'll Die When I Choose, she says, "a lot of this I never really think of as applying to me."

In her office, readying for a photo shoot, she applies her make-up with the aside, "Don't think you can fool all of the people all of the time".

It's a funny, ironic line from a conviction politician who has made a career out of being a straight-talker. Mostly, she says, she prefers people to use old photographs, and it's not difficult to see why. Back in the old days, she was a babe, the sexy "blonde bombshell" of politics, who, when she famously took the Govan by-election by storm in 1973, looked, as one journalist put it, like our very own Abba-style "Dancing Quine" .

She even sang, as she does for me during the interview, reprising a number from her old campaigning days in a strong folk voice. In recollection of her former glory, on her computer screen she pulls up an Alasdair Gray portrait of her from 1977, yellow-haired and wearing the pink trench coat she sported in that famous by-election victory.

All the way, from then to now, through a late 1970s stint as deputy leader of the SNP, the disintegration of her first marriage to publican Peter MacDonald, her time as a forceful TV and radio presenter, her bouncing in and out of the SNP, and her second and current marriage to former nationalist firebrand Jim Sillars, she kept her convictions, and that bright blonde crown.

Even now, she still takes great pride in her appearance. She talks as if she has three different homes: her house in Edinburgh's The Grange, Holyrood, and Gordon Wilson's hairdresser's, neatly situated between the two. The first person she told about her Parkinson's diagnosis was her former hairdresser.

There is a mild tremor in her hand, but it seems to calm as the Lothians MSP lifts foundation brush to her skin. She jokes that the range of make-up that she wears is excellent for "people who haven't worn make-up, can't be bothered with it or are half-blind."

She is, she adds, "all of these things, and since taking the pills that I'm on, my eyebrows are falling out, so there's that to cope with." But, nevertheless, it's clear that one skill she hasn't lost is her ability to slap on the glamour.

"I could do this in the dark in a taxi," she grins. "In fact, I have done." The feat seems, to me, a marvel, given that it was actually while removing make-up around 15 years ago that she noticed the spasm that was her first perceptible symptom of Parkinson's, the degenerative disorder of the central nervous system that impairs motor skills, cognitive processes, and other functions.

When she first went to her GP, he reassured her that it was "definitely not Parkinson's". A visit to a specialist, however, revealed the truth, and now she knows a great deal about the disease, mainly thanks to Sillars, who researched the literature and who, she jokes, "is not always good for everything, but he's been great for this… he keeps me up with the trends in research. It's good. I know I would get very bored of that very quickly." He is also the person that reminds her to take her pills.

MacDonald kept the disease under wraps for six years, not even revealing it to most of her friends and colleagues, but was outed through a leak in 2002.

This was just one of a series of incidents that terminated her relationship with the SNP, and included accusations of breaches of party discipline - for missing a vote in parliament without permission and publicly criticising an SNP group decision - which ended in her relegation to fifth on the Lothian region's list ranking.

In a way, however, this rift had been a long time coming. MacDonald and Sillars represented the party's fundamentalist wing dedicated to winning outright independence, at odds with the "gradualists".

Though John Swinney was leader at the time of her ousting, she has also had a long and rocky relationship with First Minister Alex Salmond. When asked what happened to cause her final break with the SNP, at the Wigtown book festival recently, she joked: "I forgot to say my prayers every night to the Great God Alex."

Meanwhile, Sillars, in an interview earlier this year, declared that he could find no life in the SNP: "They are stagnant and stale". MacDonald does not agree. "There is life left. Just not necessarily in the most senior offices."

She copes with her disease, she says, through a lot of "self-management", an understanding of "pathways of movement" nurtured during her years as a PE teacher, the first job she trained to do straight after leaving her school, Hamilton Academy.

Aquafit and swimming are part of her fitness regime, though she had to skip her swim this morning on account of exhaustion. In fact, it seemed surprising that exercise, or even this interview, had still been part of her plan, given that just the previous morning she had woken up, read the papers, felt the nauseous side effects of a flu vaccination, and had to go back to bed.

But the lady stops for nothing. At one point I suggest we finish the interview, given she looks as if she is about to nod off mid-sentence, but she yawns and then continues talking, eyes closed. "No, we'll stagger on," she says. Indeed, it's no surprise when I ask her if she has any plans to retire at the next election that she says, "Not unless I fall down dead."

There are too many things, after all, that she still wants to do. She would like, she says, "to see a collegiate approach to physical education that includes exercise, eating and preparation of food and also other things like learning to sit properly." She also has a lingering ambition to change how we approach recreational drugs.

Meanwhile, her husband would like her to quit before she falls down dead. "He would like me to stop now," she says. "But at the same time he knows it's a part of me. Though, when I'm asking him to consider my state of tiredness, you would think he'd never been in politics. He doesn't give any impression of understanding the pressure or priorities. But in some ways that's quite refreshing. It means all these years as a politician have still left him with a soul."

Their lives, in fact, couldn't be more different now. MacDonald describes a conversation they had in the morning, which began around the subject of missing serviette rolls, moved on to politics and then ended with her asking the question "Are you going to play golf?... Why not? You've spent a fortune on clubs and fees?"

This year hasn't been an easy one for her. Two months ago, speaking in Wigtown, she was saying that she made it out to the "golf course every now and then to give the grandchildren a good laugh" but now, she says, she rarely goes: "I can't really walk all that well."

Nevertheless she is still up for the physical battle. She talks of playing swingball with the grandchildren (she and Sillars have 10). Though she no longer has the physique of a sports person, and hasn't for many years, she is, by nature, a warrior, facing down all challenges (which, over the years, have included several bouts of septicaemia, a minor heart condition and a hip replacement operation).

This is a woman who talks of having "delivered my babies without stitches", someone who, when an audience member at Craiglockhart Ladies group, a church group she is speaking at, mentions having recently taken up a dance exercise, asks, "Can I do that standing on one leg?"

MacDonald has heard all the arguments against her bill and tried to counter them. There is, for instance, the fear that families might pressurse or cajole their loved ones into assisted suicide for financial gain. "My experience is," she says, "that most families don't want the parent to go, no matter how badly the parent is feeling the experience."

There is the worry that someone might make the decision in a momentary depression. Under her plans a psychiatrist's assessment is required to ensure against this. She also points out that in Oregon, where assisted suicide is available, only 40% of those who look into it ever carry it through. For many it serves more like an insurance policy, a get-out-quick clause, that gives them the strength to carry on.

But the real accusation she can't quite escape is that of disability campaigners who say that it devalues the life of the disabled person. MacDonald points out that this legislation isn't designed for those who are born disabled, but those who, through some accident, become so and find it intolerable.

One of the most common, but milder criticisms, meanwhile, is that this idea of control over death is just another facet of a selfish baby boomer generation that expects to be in charge of all aspects of their lives - even their deaths. "Maybe it is. But the thing about this generation is that they're already being encouraged to manage their conditions and illnesses by official folk. So that criticism doesn't worry me."

She has, she has often said, "a private faith". What does that mean? "I believe in the teachings of Christ. I think that's a good way to set your moral compass." Mostly, she is respectful of her critics in the church and among people of faith, though speaking at Wigtown, she couldn't resist a cheeky one-liner: "Some of these men of the cloth are not fit for purpose."

She recalls, too, asking various representatives of the different faiths if they found "this bill [to] be morally repugnant and ethically unacceptable." The Free Church representative said, 'Och, I couldn't have put it better myself.'"

MacDonald's main gripe, however, is that many of those who oppose the bill, the Care Not Killing campaign, complain that it sets us off on a "slippery slope", when in fact their objections are more fundamental than that. Instead of saying, "I believe God should have power in these matters", she says, "they try to frighten people with worst-case scenarios".

In fact, what is striking about the bill is how strict the legislation is, all the people it will not cover. Those with dementia or Alzheimer's, for instance, are not included, since it is impossible to determine mental capacity.

It's this tightness that seems to sway people. Having been to several events at which MacDonald has talked, one a religious group, I've been struck by how persuasive she is. People leave convinced. They walk out the door charged up by the idea that "Scotland needs to do something bigger and braver".

And this is why she talks to these groups: because she thinks she can inspire them into prodding their own MSPs into voting it through, at a time when, with elections probably in May next year, they are sensitive to public opinion. She says: "Some of these MSPs are scared of the church, some of them are scared of their parties, but they're all scared of you."

The funny thing about MacDonald is that, even on this depressing subject, she pumps people up on life. She is relentlessly affirming even as she gives death her sideways glance and mockingly recalls moments of anger and frustration.

"I'm not stoic," she says, "I shout and yell about it. But I don't do it here and I don't do it that much. You just get on with it, manage it to the best of your ability." With her, there is always just another joke around the corner. Just when you think she's got serious, she throws in a sharp one-liner and flashes a rabbit-grin. "You can have a very bad end with Parkinson's," she says at one point, "but on the other hand, you can be like me, because I'm lucky. I'm not having a bad end."

And perhaps she's right. Perhaps there will be no bad end, maybe she'll be able to go out at her own appointed time to the dulcet tones of Dolly singing Islands In the Stream.

Or, perhaps not. Perhaps, MacDonald is actually one of those people who really just wants the insurance, to know she can get out, but will keep on going, no matter how bad the end is - choosing life.

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