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I ask members of the public who have come to visit us today—and they are very welcome—if they are leaving the chamber to please do so quickly and quietly, because we are about to move on to our next item of business.
The next item of business is a members’ business debate on motion S6M-20598, in the name of Jeremy Balfour, on recognising lived experience and strengthening disabled people’s representation in Scottish democracy. The debate will be concluded without any question being put. I invite members who wish to speak in the debate to press their request-to-speak buttons.
Motion debated,
That the Parliament recognises the value of lived experience in informing effective scrutiny and legislation and ensuring that those views are embedded across legislation passed at the Scottish Parliament; commends events such as the Parliament Disability Summit, first held in 2023, which highlighted disability issues and allowed disabled people across Scotland, including in the Lothian region, to be at the forefront of political discussion; welcomes that the Summit will be held again on 21 February 2026 and notes the view that this Summit should continue on a biannual basis; notes with concern reports that disabled people remain significantly underrepresented in elected office in Scotland, with 5% of the current MSPs declaring a disability compared with 24% of the general population; understands that people from other protected groups also continue to face underrepresentation; acknowledges what it sees as the many barriers that exist in society which discourage or prevent disabled people and others with protected characteristics from standing for election; welcomes initiatives such as the Access to Elected Office Fund run by Inclusion Scotland, which, it understands, helped 14 disabled candidates in the 2021 Scottish Parliament election through assistance with transport, communication and/or personal assistance, and notes the calls on all political parties, the Scottish Parliamentary Corporate Body and the Scottish Government to continue to work collaboratively to remove barriers, promote inclusion and strengthen disabled people’s representation and participation in Scotland’s political institutions, while also taking steps to improve representation and participation for all groups protected under the Equality Act 2010.
12:50
I am grateful to colleagues across the chamber for their support for the motion. I am sad that it has not gained the support of all parties in the Parliament. I hope that that is not a comment about their support for disabled representation, which is an issue that I am sure all reasonable members can agree is worthy of parliamentary time. I say gently to my former colleagues in the Scottish Conservatives that the fact that none of them has supported the motion reflects on the party that I no longer recognise in regard to disability issues. For two other parties to feel that disability is not an important enough topic for them to even attend the debate speaks of where we are and where we still have to go.
The core of this afternoon’s motion is laid out in its first line:
“That the Parliament recognises the value of lived experience in informing effective scrutiny and legislation and ensuring that those views are embedded across legislation passed at the Scottish Parliament”.
If we hold that to be true, we owe it to the people of Scotland, whom we serve, to make a conscious effort to ensure that Parliament looks as similar to the people whom it serves as possible.
In the time that I have been in Parliament, we have made progress. We have seen changes in legislation that give greater protection to people with disabilities. We have seen the Scottish Government pick up the challenge around changing places toilets. We have seen more money go to disability charities. However, we still face some major issues.
This morning, I received an email that said:
“Glasgow IJB ended its funding for Scottish Huntington’s Association to provide specialist services on 1 January—a decision condemned by cross-party MSPs and further called into question by Glasgow City Internal Audit. One thing is beyond dispute: Huntington’s families were not consulted. A decision was made about that community without its knowledge or input. That should not be so.”
There are still people with certain disabilities, such as learning disabilities and hidden disabilities, who are not getting the coverage, help and support that they deserve and require. There are also issues around employability. Too many people—again, particularly those with learning disabilities—are not getting the employment that they want and are capable of carrying out. I have to say that I think the Parliament missed an opportunity when it decided not to appoint a disability commissioner. I understand the arguments that were brought by some against doing so, but I think that the disability community is still struggling to come to terms with that decision.
To be more positive for a moment, a couple of Saturdays ago, the minister, Pam Duncan-Glancy, Emma Roddick, Carol Mochan and I held the disability summit here in the Parliament. Such events help to inform policy and decisions. It was a great success. Almost every desk was filled by people with lived experience of disability. I am pleased that the summit has been held for a second time and hope that, whoever comes back after the election, it will become a biannual event. Unfortunately, although such events are vital in making the voices of disabled people heard, they do not come along enough.
We have to examine what outcomes came from the disability summit and what real differences it will make to the lives of people with disabilities. As I said, progress has been made in representation across protected characteristics, even during my 10 years in the Parliament. However, we must recognise that we still have a significant way to go. Only 5 per cent of MSPs have declared a disability but, in Scotland, 25 per cent of people have a recognised disability. That difference is unacceptable and something needs to be done about it. Let me be clear: I do not blame the electorate. I am here thanks to the people of Lothian region. Other members who have disabilities are also proof that people in Scotland are not against electing members with a disability. The issue is that not enough is being done to encourage disabled candidates to stand.
I understand that that is a somewhat cheeky point to make now that I sit as an independent but, having been a member of a party for 40 years, I think that all parties in and outwith the Parliament need to do much more to attract people with disabilities. Encouraging and promoting disabled candidates must start at the grass roots and parties should do everything in their power to make the election process as accessible as possible. However, it goes beyond that. What do we expect of our members?
Does Jeremy Balfour agree that the parties could emphasise the list system in the Scottish Parliament as a great way for disabled people to get higher up the party system, and that it is a great way for parties to give them priority?
That debate needs to happen. Interestingly, other Commonwealth countries have been even more radical on that. Some of the east African countries have disabled-only lists, so a candidate has to have a disability to be on such a list. It is competitive among different individuals, but that is one model. South Africa, for example, has gone much more down the route of getting political parties to have more disabled candidates. There are questions such as whether delivering leaflets is essential for party members to be seen as possible candidates. There are also questions about how accessible buildings are. All political parties need to address such issues.
We have made progress. The access to elected office fund has been put into legislation and will be implemented for Scottish Parliament and local elections. I hope that the United Kingdom Government will consider the scheme for Westminster elections as well. The fund allows disabled people to have the help and resources that make an even playing field. The administration of that scheme has been helpful. I and other members of the Parliament have benefited from it.
One fear that people have about standing and being elected is what the Parliament will be like. From my experience of working in many different roles over the years, the Scottish Parliament is one of the best places to work for disabled people. I have found from every individual working here a willingness to be helpful, kind and open to suggestions. If disabled people are worried about being elected, they need not be, because the Parliament, from the chief executive down, has done more than I could have ever hoped to make it that way from my first day.
This might be my last long speech before the election. Like all members, I do not know how the electorate will vote come May. However, a simple message needs to be picked up after May by whoever is elected: nothing for us without us. The Parliament cannot make decisions on what is best for disabled people if disabled people are not here.
Mr Balfour, you will need to bring your remarks to a close.
If the Parliament is to serve the people effectively, it must reflect the people effectively.
As the motion in my name says, it is the job of political parties, the Scottish Parliament and the Scottish Government to drive progress. I hope that that will be taken up by whoever is elected in May.
I gave Mr Balfour some latitude, but I advise members that we are starting again at 2 and that the security personnel must be allowed time to come in and clear the chamber. We move to the open debate, with back-bench speeches of up to four minutes. I intend to ensure that members comply with that.
13:01
I welcome today’s debate. I thank Jeremy Balfour for bringing the motion, which I supported, before the Parliament. I agree with much of what he has said and I did not realise that that might be one of his last speeches in the chamber.
Strengthening disabled people’s representation is not a peripheral issue. It is central to building a democratic system that works for everyone. Lived experience enriches our scrutiny, improves our legislation and ensures that policy is grounded in the reality of people’s lives.
Throughout my time in the Scottish Parliament, particularly through my work on health inequalities, diabetes and lung health, I have seen at first hand how crucial lived experience is to good policy making. As co-convener of the cross-party groups on diabetes and lung health, I have had the privilege of hearing directly from people managing long-term conditions, many of which are invisible and misunderstood. Their insights have shaped our understanding of the challenges that they face and the actions that are needed to tackle those challenges. That reinforces why people living with a disability or hidden conditions must be included at every stage of political and policy development. Their exclusion has real, measurable consequences.
Misunderstanding continues to be one of the greatest barriers that people with hidden disabilities face. A person living with type 1 diabetes may struggle with glucose levels, which can sometimes change unpredictably. I know that because I am one of those type 1 people. Someone with chronic obstructive pulmonary disease or severe asthma may live each day managing breathlessness. However, because those conditions are not visible, many people feel judged, doubted or dismissed when they ask for the support that they need. The stigma stops people participating fully in society, and it prevents far too many people from considering roles in public life.
Raising awareness of those challenges has been an important part of my work, whether during debates on topics such as world COPD day or world diabetes day, or through engagement with communities across my South Scotland region.
However, awareness alone is not enough. We need structural change. I therefore welcome the Scottish Government’s efforts to embed disabled people’s voices into policy making, including through the disability equality plan. Developed in co-production with disabled people’s organisations, the plan commits to building disability competence across Government and includes targeted investment to address long-standing barriers. Initiatives that are supported by the Health and Social Care Alliance Scotland such as strengthened mental health support, improved advice services and the Cabinet takeovers by disabled people’s organisations, the most recent of which happened in February, demonstrate a growing commitment to meaningful engagement.
Representation matters deeply. Disabled people remain significantly underrepresented in elected office, not because of a lack of ability or ambition but because of the barriers that they collectively face, which need to be removed. The access to elected office fund, which was created by the Scottish Government and delivered by Inclusion Scotland, has shown what is possible when proper support is provided.
We must continue to build on that progress. The evidence is clear that disabled people face higher levels of poverty, poorer health outcomes and barriers in employment, housing and education. Those inequalities intersect with the inequalities facing people with other protected characteristics. That alone makes the case for ensuring that people who have a disability help to shape the policies that directly affect them. Empowering disabled people strengthens our democracy and leads to fairer, more compassionate decisions.
I welcome the cross-party commitment that we will have today, and I reaffirm my commitment to working with colleagues and communities to remove those barriers and support disabled people’s full and equal participation in Scotland’s political life.
13:05
I am pleased to speak in this afternoon’s debate, and I thank Jeremy Balfour for bringing the issue to the chamber.
The motion for today’s debate speaks to the simple but important principle that lived experience can strengthen our democracy. Although statistics and political theory are no doubt important for making policy, they cannot be the only things that influence how the Parliament decides on law. Legislation must also be informed by the experiences of those who the decisions affect. That is why we support having politicians who have a variety of life experiences, as that can improve the choices that they make.
We should also support the inclusion of groups who are underrepresented in politics, which is why initiatives such as the Parliament’s disability summit are so important, as the motion highlights. The summit demonstrates clearly how the political debate improves when underrepresented groups, including disabled people, are fully involved in the wider political debate. Jeremy Balfour’s motion says that disabled people are underrepresented in Scottish politics, which is a trend that is also happening in the United Kingdom, across Europe and in the United States.
A study in 2024 found that disabled people in the UK and the US feel better represented by disabled candidates. That was driven partly by a sense of shared identity but also by a feeling that they are better represented by candidates who share their disability. The study also highlighted evidence that non-disabled people also see disabled political candidates as bringing
a range of traits and skills to the table”,
which is important partly because disabled candidates offer different life experiences, as we know. That reminds us of the need to tackle the remaining barriers that discourage and prevent disabled people from participating in politics, as that should help to unlock the potential that many individuals can offer to the political system.
That work includes programmes such as the access to elected office fund, which is run by Inclusion Scotland. That should go alongside continued efforts to tackle other inequalities that disabled people face in their day-to-day lives. For example, we know that the number of disabled people in employment has increased over the past decade, but it is still very small when compared with the number of non-disabled people in employment. For groups across society, tackling one form of inequality often means tackling other forms alongside that.
Members across the chamber agree that the Parliament should fully reflect Scotland and what Scotland represents. That means that we must be committed to removing unnecessary barriers to inclusion, and if we truly want to be inclusive, that must include our political system. Those barriers include disabled people and many other demographics who remain underrepresented in politics as a whole. Lived experience should not sit on the margins of discussion. It should be recognised as part of the effective scrutiny that proper law making requires.
Promoting inclusion and ensuring that there is diversity across political issues and across the political divide is vital. The Parliament should be grounded in the realisation that it affects everyday lives across Scotland.
13:09
I thank Jeremy Balfour for bringing the debate to the chamber. I take the opportunity to thank Jeremy Balfour for all his work and contributions in the area. The member is a champion of the cause and is very vocal about these issues, and I mean that in the best possible way. He also has practical ideas on how we break down barriers, engage with disabled constituents and fully include people in decision making, and I thank him for that work.
Over the five years that I have been in the Scottish Parliament, I have been pleased and encouraged by members’ engagement with the disabled community, including those from a range of backgrounds and with a range of disabilities. However, as has been mentioned by others, that does not mean that we are doing enough or doing things in the right way.
While researching for this debate, I read about the history of the slogan “Nothing about us without us”, which Jeremy Balfour mentioned. It relies on the principle of participation and has been used by disabled people’s organisations throughout the years as part of the global movement to achieve the full participation and equalisation of opportunities for, by and with disabled people. We can all agree that we have made advances, but that we have not yet achieved all of the slogan’s aims. We should understand that that is part of how we move forward.
I really wanted to speak in this debate, because I was lucky enough to attend the second Scottish Parliament disability summit, which was held here with a large number of groups representing disabled people, young people with disabilities and young people caring for loved ones with disability. The chamber was packed with so many people. The summit took place on 21 February, in person at the Scottish Parliament and online, and brought together disabled people, carers, advocates and allies to reflect on the progress and, importantly, to look at the future. As Scotland heads towards the next election, it is so important to ensure that disabled people are part of the conversation.
The summit offered an opportunity to invite disabled people in Scotland and their organisations to discuss ideas for change. What would they like there to be in place to help the Parliament to achieve or create a more inclusive society? Questions were asked about the progress they wanted to see in relation to transport, social care, inclusive education, social security and, importantly, voting.
I was lucky enough to co-chair a group with a fantastic young woman, Eilidh Henderson, who generously shared her experience and that of her family during our session on social care. Eilidh took the lead on the first online breakout session, which was a first for the summit. I note that Eilidh would be happy for me to say that, after a couple of technical problems, the session went very well. It was facilitated technically by the Parliament staff. Eilidh and I made sure that an extra breakout was added because we recognised that being on screen for such long periods of time can be difficult and exhausting for people.
All the feedback so far has suggested that the online option helped allow others to be in that breakout session and that the experience overall was positive. People mainly talked about their experiences, but one thing that they mentioned that the Parliament will need to look at is self-directed support—the expectations for it and where it has failed people.
I am aware of the time. Before I close, I add that I was lucky enough on that day to have not only Eilidh but a young woman from Cumnock called Emma McEwan who was with me observing. Emma hopes to work with young people. She found it fascinating to be around people in a situation where disabled people were in control of the narrative and the agenda. Emma reported back that that gave her a better understanding of everyday life for people with disabilities and the barriers that they encounter. We must make sure that that happens more in the future.
13:13
I welcome the opportunity to speak in this important debate and I thank my colleague Jeremy Balfour for bringing the matter to the chamber. His commitment to disability rights has meant that he has kept it on the agenda, and I hope that he is able to continue to do that in here after May—or, if not, from outside this place, as I will be doing.
The value of lived experience matters. Our job in here is to represent constituents and to improve lives, and we can only do that well if we represent the breadth of experience that exists. This parliamentary session has seen an improvement in representation, which has been reflected not only in legislation, but in the way that our Parliament does its business. I put on record my thanks to the brilliant staff in security, information technology, facilities management, the chamber desk, catering, the Scottish Parliament information centre, legislation and cleaning—with a special mention for the brilliant Brenda Law—for taking inclusion so seriously and making me and others feel so welcome. I also thank the Presiding Officer for leadership on that and for agreeing to host the first ever parliamentary disability summit in 2023, to celebrate international disabled people’s day. I hope that it becomes a biannual summit.
Although, in this session, much has been done on inclusion that we can be proud of, we are not there yet. Almost one in four people in Scotland are disabled, yet only 5 per cent of members in this place say that they are. People from other protected groups continue to face underrepresentation in here, too. There should be nothing about us without us. Policy and practice and the laws that govern them should work for all of us. To get there, we need to have a more representative Parliament.
When I was elected in 2021, I was the first permanent wheelchair user to become an MSP. Although I am extremely proud of that and of my time here, it should not have taken so long. I will not be returning here in May, but I will continue to fight for disabled people to take their rightful place in society and here in their Parliament. I will leave the ladder of opportunity to enable disabled people to come after me. We are here, surely, to improve the everyday lives of the people we serve and to ensure that the people who come next take us further and faster on our journey to a Scotland that will be a land of opportunity for all of us.
We cannot afford to backslide, because the distance to go is too great. Too many disabled people cannot get out of their beds because they have no social care. Too many disabled people are trapped in their own homes because those homes are inaccessible. Too many disabled people cannot get around Scotland because they cannot get on public transport. Too many disabled people are not in work because of all that, as well as the negative attitudes that mean that some employers are afraid to employ disabled people.
In preparing for today’s debate, I was reminded of the training on disability equality that I gave to MSPs in 2017. One member said to me, “The experiences you describe are unacceptable. Why aren’t disabled people beating down the doors of this place to get it fixed?” I replied, “Because you can’t get here to beat down the doors if you can’t get out of bed.” It is that basic, and until we sort out the basics, representation of disabled people on the high street, in workplaces and in this legislature will be a pipe dream for too many. We must not let being a representative stay in the dreams of disabled people. We must allow them to realise it, because disabled people have a place in here, too.
Let us leave the chamber with renewed resolve to make that happen. It will not take rocket science, but it will take change—in small places, close to home, in housing, in care, in transport, in employment and so on. It will also take bravery on the part of all members who return and the new members who enter Parliament with them. I wish everyone who ever occupies these benches all the best of luck in the world to deliver a fairer Scotland, because disabled people need them to. I will continue to work day and night, out of here, to help to make that happen, too.
13:17
I thank Jeremy Balfour for lodging the motion. When I attended the disability summit with him a fortnight ago, it was lovely to see so many adjustments across the Parliament, from ramps around the building to live captioning throughout the event at the front of the chamber. It would be wonderful to see such adjustments being made, and disabled people from across Scotland taking their place in the chamber, on a more regular basis, but, sadly, a lot more needs to be done by political parties, Government and society at large if that is to become a reality.
The behaviour that we saw at First Minister’s question time, which has been evident in many recent FMQ sessions, which targets people—mostly those with hidden disabilities—who claim benefits and tars neurodivergent and mentally ill people with allegations of fraud without knowing their personal circumstances sets us back. I am deeply concerned by that level of completely disgraceful targeting, which today involved a named disabled woman who does not sit in this Parliament and who was, therefore, unable to reply. That is never acceptable. As well as sending a message to the person who is targeted, it tells every neurodivergent activist, employee or constituent out there that they are deserving of suspicion and undeserving of holding office. We must do better.
I am delighted that some of my constituents, including one with autism, attended last month’s summit. It was a long way for my constituent to travel, but he has a lot to offer policy making, as many disabled people do. In the past 48 hours, there has been a great deal of negative attention on disability, which has included screenshots flying around on social media of the types of adjustment that a disabled person who claims ADP might need, captioned with comments such as, “Does this sound like an MSP?” It has even been highlighted in newspapers that an ADP claimant has been seen enjoying life and shopping with her friends, as though that suggests that she cannot be disabled.
We belong in public life and deserve to enjoy our lives as much as anyone else. I wish that the symptoms of autism did not trigger such a visceral, judgmental response. If the public reaction is that a neurodivergent person does not sound like an MSP, that is our failure, not the failure of the neurodivergent person.
Of course that person can be an MSP. Of course someone who is capable with adjustments in place is just as deserving of taking up a role as someone who requires none because the environment has already been designed with them in mind. Of course the necessary adjustments should then be put in place and the individual should not be out of pocket, especially when adaptations often cost eye-watering amounts of money.
If someone needs a ramp to take up the office of Presiding Officer, there should be a ramp. If someone needs Braille to press the right buttons in the chamber, that must be provided. If someone needs to claim benefits to pay for adjustments to manage their autism, they should be supported and welcomed into the workplace.
I regret that we will lose so many of the disabled MSPs who sit in the Parliament, regardless of what the election results might be, because so many are not seeking re-election. However, it does not surprise me, and we need to do better. I have sent a list of suggestions to the Presiding Officer that could make the Parliament and the induction for MSPs more accessible.
I hope that this debate, Jeremy Balfour’s words and the many people who are crying out for change are listened to and that more disabled people are able to stand for and take up seats in the Parliament in the future.
13:21
I give my sincere thanks to all the members who have contributed so thoughtfully to today’s debate. I also thank Jeremy Balfour for bringing the motion to the Parliament.
The strength of feeling across the Parliament shows just how deeply we value the lived experience of disabled people and the vital role that it plays in strengthening our democracy. The motion before us underscores that point clearly by recognising that lived experience is essential to effective scrutiny and better legislation.
As members have referred to, the Scottish Parliament recently hosted its second disability summit, which I was delighted to take part in. The themes that we heard about—representation, participation and accountability—speak directly to today’s debate. The summit reinforced that lived experience must continue to guide scrutiny and policy making across the Parliament.
Jeremy Balfour took time to acknowledge the progress that has been made, and he was right to point out that we have more to do. I pay tribute to Mr Balfour’s relentless campaigning for disabled people’s rights. Emma Harper also exemplified the value of lived experience in shaping good policy development.
Lived experience is essential evidence that is rooted in the disability rights movement’s principle of nothing about us without us. I have had the pleasure of seeing the Purple Poncho Players, who exemplify that principle through music and art, showing us how essential it is. When such evidence is systematically gathered, and gathered ethically, it strengthens committee scrutiny, improves policy design and, ultimately, enhances the quality of our laws.
That direction of travel is clear across the Parliament and it is embedded in the Scottish Government’s approach to disability equality. Our disability equality plan was developed with disabled people’s organisations, Inclusion Scotland, Glasgow Disability Alliance and Disability Equality Scotland. Disabled people’s voices shaped the work from the start. The first phase of the plan focuses on the priorities that the DPOs identified, which were supporting disabled household finances, enabling full participation in communities and national life and improving mental health.
To underpin that, our recent budget set out a £3.5 million multiyear funding commitment to disability equality, providing certainty for disabled people’s organisations and disabled leaders. That will build and strengthen capacity across the DPO sector and among disabled people, leading to improved participation and inclusion in communities and national life.
Members will also be aware that, on 3 February 2026, we held the Cabinet takeover. That was the first of its kind in the United Kingdom, so it was a landmark moment that placed directly at the Cabinet table the lived experience of disabled people as equal partners. It did not simply gather views; it brought disabled people into the centre of Government decision making.
Jeremy Balfour has referenced, and the motion highlights, the important reality of the fact that only 5 per cent of current MSPs declare a disability, compared with—according to my figures—24 per cent of Scotland’s population. That disparity absolutely matters. Representation shapes the discussions that we have—as it has done today—along with the priorities that we set and the solutions that we design. Democracy is at its strongest when it reflects the full diversity of the nations that it serves. Alexander Stewart, Emma Harper and Carol Mochan acknowledged that.
As many members have highlighted, too many barriers still exist, whether those are structural, financial, attitudinal or practical. Those barriers discourage or prevent disabled people and others with protected characteristics from putting themselves forward for elected office.
Recognising those barriers is the first step to dismantling them. The access to elected office fund is an important part of that work. In the 2021 Scottish Parliament election, it supported 14 disabled candidates. In the 2022 local elections, 46 people received support and 22 of those were elected. That demonstrates clearly what is possible when barriers are removed. That progress is worth acknowledging, and it underscores why initiatives must continue to grow.
Many disabled people belong to other underrepresented communities, and that intersectionality matters. We will keep listening to and working with those with experiences that cut across race, disability, sex, sexual orientation, religion and belief, so that our actions reflect the whole person, not just one part of their identity.
The responsibility for change is shared by us all across Parliament, political parties and communities. Of course, language matters, as Pam Duncan-Glancy and Emma Roddick have highlighted very effectively, reminding us all to be mindful of being respectful and not to add to the stigma that can, often, still attach.
The debate has reaffirmed a simple truth: democracy works best when everyone can fully participate in it. We have made progress, but we absolutely have more to do. With the multiyear commitment and the momentum from the Cabinet takeover and the second disability summit, we will support more disabled people to participate, lead and be represented across Scotland’s public life.
That concludes the debate.
13:28
Meeting suspended.
14:00
On resuming—
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