In (another) last-minute U-turn, sponsor Kim Leadbeater has finally agreed to hear from a representative of a Deaf and Disabled People’s Organisation (DDPO) during an oral evidence session for her controversial Assisted Dying Bill, currently making its way through Parliament.
However, DDPO’s feel this fig leaf at the final hour is too little, too late in a parliamentary process that has consistently excluded them – and still is.
Assisted Dying Bill: a sudden U-turn, but barely a win
In November, parliament passed Kim Leadbeater’s Terminally Ill Adults (End of Life Bill) at second reading. MPs voted 330 to 275 – giving it a firm majority of 55. This was despite the fact that every single DPPO – all 350 – has opposed it from the start, and urged MPs to listen to them.
Currently, the bill is at the committee stage, and is in the process of gathering evidence.
From the start however, Leadbeater had skewed the committee membership in favour of assisted dying. As the Canary pointed out, the majority are also supporters of Leadbeater’s bill in its current form, or have made indications they’d want to expand it.
Most notably though, Leadbeater had included just one disabled MP in the committee – who happens to be pro-assisted dying.
Then, during the first session, Leadbeater and her supporters in the committee voted to exclude disabled activist Ellen Clifford from the upcoming evidence sessions. Clifford is co-ordinator for the UK Deaf and Disabled People’s Monitoring Coalition.
Specifically, Labour MP Naz Shah had brought a series of amendments to the witness list. One of these was to add Clifford to the line-up. Unsurprisingly, the committee quickly shot this down.
Now however, Leadbeater seems to have changed her mind about excluding DDPOs from the sessions – in a probable backhanded way.
Disability Rights UK to give evidence
On Tuesday 28 January, the committee began taking oral evidence from a number of witnesses. Crucially, freshly updated and published amendments showed that Leadbeater had added Disability Rights UK (DR UK) to an upcoming oral evidence session.
But here’s the catch: Leadbeater has shoehorned DR UK in during an hour-long slot alongside four other witnesses. That the Canary can tell, there are no other slots split between so many witnesses at once.
Disability Rights UK is a DDPO that represents 350 organisations. It’s also an active member of the UK Deaf and Disabled People’s Monitoring Coalition that Clifford co-ordinates.
The Coalition welcomed the decision to include DR UK. However, it believes the move has come too late in a process that has been inaccessible and dismissive of deaf and disabled people’s concerns. Clifford said that:
It’s good news that the Committee will be able to hear the perspective from organisations run and controlled by Deaf and Disabled people. Our organisations have expertise in a number of the very complex and difficult issues at the heart of this bill.
These are key issues that MPs need to understand before they can be expected to vote in an informed way, for example the lack of any clear line between terminal illness and disability, the difficulties that even very experienced professionals have in detecting coercion, issues about capacity and so on.
It is vital that the Committee does not look at legalisation of assisted dying as an abstract question but fully considers the range of evidence that could be at their disposal about the workability of the bill and its implications.
DR UK says…
Chief Executive of DR UK Kamran Mallick said:
It’s welcome that the Committee has revised its decision and now included DDPOs within the list of witnesses giving oral evidence over the next few days. Disability Rights UK represents 350 different organisations and are also part of a wider collaborative network of organisations that includes grassroots disabled people led campaign groups and trade union disability committees.
No DDPO in the UK is in favour of Assisted Suicide. That isn’t some dogmatic, entrenched position. Disability Rights UK only recently changed our position from neutral to against. This is on the basis of Deaf and Disabled people’s lived experiences backed up by robust evidence and expertise in disability issues.”
Leadbeater and supporters of the Bill have tried to argue that since it’s scope is limited to terminally ill patients, it won’t impact chronically ill, deaf, and disabled people. However, in an unequal society that disproportionately marginalises disabled people, this is also very clearly not the case.
From a higher likelihood of living in poverty, to restricted access to social care support, mental health services, and timely medical care, there are enormous inequities disadvantaging disabled communities.
These limited options and support for them to live their lives well mean that they do not have equal chances if they become terminally ill either.
Therefore, the suggestion that the Bill is not about chronically ill, deaf and disabled people shows an alarming lack of understanding from MPs.
A ‘loaded choice’ is ‘not a choice at all’
One such example is that of Kevin Caulfield. In his early thirties, he was diagnosed with a ‘terminal’ HIV-related neurological condition with a prognosis of less than six months to live. He was in a desperate situation both physically and mentally.
Caulfield has freely admitted he was so desperate he may well have “jumped at” the opportunity of ‘assisted dying’. And significantly, he would meet all the criteria of the proposed Bill. However, 27 years later, he is still here.
Sharing his story, Caulfield said:
At the time I was desperate and may well have jumped at the chance of the choice of “assisted suicide”. But it would have been a very loaded choice, not a choice at all in my opinion.
Why? Because I was scared, I felt I had no control, losing functions by the day or enough relevant support. Assisted dying would have given me a focus when what I needed was more time with loved ones and frank conversations about how to deal better with multiple symptoms.
That’s why it’s so critical to listen to and take seriously Disabled people with relevant experience. Morally that is the right thing to but that takes time and resources to really involve us in accessible ways.
Anyone with a terminal diagnosis is a Disabled person in law and yet we are not as Disabled people being treated with equity in this rapid process. It’s so important that Parliament does really engage with Disabled Peoples Organisations otherwise they risk getting this very wrong.
Of course, if the Bill passes, what Caulfield described would become a very real danger for many disabled people.
Disabled voices go unheard in Leadbeater’s bill
Spokesperson for Disabled People Against Cuts (DPAC) Paula Peters therefore underscored that:
We need our voices to be heard about what life is like for disabled people, especially after a decade and a half of austerity. Anyone who is disabled who becomes terminally ill or those with progressive conditions are experiencing that within a context of cuts to all the vital services we rely on to survive.
In 2016 the United Nations found the UK government guilty of grave and systematic violations of disabled people’s rights. Since then, things have got much worse. According to the new government’s plans things are set to get much worse still. You can’t give disabled people an equal choice to die until you give us more of an equal choice to live. There are more than 16.1 million of us across the UK so the equalities impacts on should not be an insignificant consideration.
Yet, hearing disabled people’s voices has been precisely what MPs and the entire process have been failing to do.
For one, because Leadbeater introduced this as a private bill, it isn’t subject to the Equality Act 2010 in the same way a public bill from the government would be. It is therefore exempt from duties to make sure disabled people have the same opportunities to engage with it as non-disabled people. And it shows.
At the start of January, the call for written evidence submissions went out. However, this did not provide information in accessible formats. Moreover, there was no clear information about the deadlines for submitting evidence to the Committee in time for amendments to be made. On top of this, the Telegraph has noted that there are just five weeks to submit evidence:
before MPs begin scrutinising the Bill on Feb 11.
Paraphrasing, the outlet highlighted Clifford’s separate and vital point that:
Government-led public consultations on disability issues must last for a minimum of 12 weeks.
‘Cards are stacked against’ disabled people
In short, the pace of the bill process is hugely inaccessible to many chronically ill and disabled people.
The lack of targeted outreach and resistance to including a DDPO representative has made it unjustifiably difficult for disabled people to inform the Committee of their concerns and fears about the Bill.
Therefore, CEO of Inclusion London Tracey Lazard said on this:
We are relieved that a DDPO will now be heard from by MPs on the Committee. However, our concerns about lack of engagement are much wider than just oral evidence. The bill is travelling through Parliament at a speed that is completely inaccessible to Deaf and Disabled people. The cards are powerfully stacked against Deaf and Disabled people to be able to share our expertise with MPs as they scrutinise such an important bill.
Featured image via the Canary
