Here in the UK, there is general agreement that the heroes of the current crisis are the staff of our beloved NHS. Even our PM and members of his Conservative Party, who have consistently voted against NHS funding and tried to undermine– if not destroy– the NHS through dubious privitisation schemes, suddenly have nothing but praise for the Service.
Despite being hamstrung by years of misguided budget cuts, and Government hostility to the idea of planning for the pandemic– which many of us have known for decades was inevitable– the NHS workers have, as the saying would have it, Kept Calm and Carried On. Well, except for the understandably-emotional public exposure of the government’s failure to properly equip them.
Regrettably, in the unseemly haste to assemble policy into which years of planning should have gone, some items have slipped through the cracks. Some number of these missed pieces are of great import to those of us labelled as ‘disabled’ in general, and to those of us who are autistic specifically.
I would like to touch on three areas where the eternal vigilance of activists and advocates has been necessary to prevent this crisis having an especially heavy impact on autistic people. These areas are hospital visitation, lockdown rules, and access to critical care.
Revocation of hospital visitation is one of the more awful aspects of this crisis. Imagine that your best friend, or life partner, is in need of hospitalisation. An ambulance crew appears dressed in full protective gear, straps them onto a gurney, and wheels them to a waiting ambulance.
You literally may never see them again. You are not allowed in the ambulance. You are not allowed in the hospital. If you are lucky, you will be able to have video calls with them. If they end up in ICU, there will be no bedside vigil. If they die, you will not even be allowed to see the body.
Now picture this from the patient’s viewpoint. Torn from your home by creatures looking like they are from a sci-fi thriller, taken away from everything you know, brought to a place with weird smells, weird sounds, and you have no idea what is going on.
This would be awful for anyone. For most of us who are autistic, this would be even worse. This scenario could easily bring about a complete meltdown in an autistic adult. I shudder to think how poorly I might handle being put in this situation.
This week the NHS in England (for overseas readers, there is a separate NHS for each country in the UK), revised the guidance on hospital visitation, and now allow autistic people to have visitation from someone when that person’s absence would cause distress.
Sadly this advice is asymmetric, and while my wife could visit me if I were hospitalized, I would be banned from visiting her. Apparently my distress is OK if it happens outside the hospital. More likely, they still haven’t finished thinking this one through.
Despite having nearly two months to prepare for rolling out lock down rules, the government instead frittered the time away and then suddenly rushed out rules. As seems typical of large-scale people management efforts, the government thought only of the impact on neurotypical people.
Where the law requires reasonable accommodation for disability, ministers were briefing that people should stay close to home, only exercise once a day (which isn’t even what the law says), and maintain a two meter distance from anyone not from their household. This was terrible guidance for many autistic people.
Lots of autistic people feel the need to get away from people when they exercise. Having to deal with other people undoes some of the anti-stress effects of the exercise.
Many autistic people also rely on having a carer along while they are outside, not necessarily someone from their household. Telling these people to maintain ‘social distance’ from their carers is simply an absurdity; and with the additional stress of lock down, there is often a need for more than one outdoors session in most days.
Due to the government briefings on these rules, some autistic people were stopped by the police because they were out with someone not from their household. Others were judged by some members of the public for going out more than once a day.
It required the advocacy of the National Autistic Society, as well as legal action, but the government has now published new guidance which explicitly allows autistic people to be out with carers; and to travel where they feel they need to to exercise. This new guidance also explicitly allows for exercising more than once in a day.
Access to Critical Care and Patient Rights
There has also been some mixed messaging around the question of access to critical care, which has raised great concern about discrimination, medical ethics, and patient’s rights.
Amidst discussion of the potential need to make agonising choices about access to respirators, as one example, there have been some suggestions made which indicate people believe that the lives of autistic people, and other disabled people, are less worth saving than the lives of others.
In one horrifying incident, a care home for autistic adults was contacted by their local NHS surgery and asked to make sure that all of their residents had Do Not Resuscitate orders in place so that they could easily be denied care if they became critically ill.
This seems like a shocking breach of medical ethics as these sorts of orders are generally drawn up at the request of the patient, and not the request of the doctor.
The idea that a medical practice would be telling people to waive their right to treatment is deeply disturbing. So far the local medical committee has responded with very technical statements and has neither apologised for, nor denounced this action.
NHS England has once again stepped up and reminded clinicians that conditions such as autism are not fatal conditions, and that any decision about whether or not to resuscitate must be made on an individual basis.
One does wish that they had gone a bit further, though, as they make it clear that they consider it legitimate to treat autism as a negative when making these evaluations.
While it is reassuring to see that it is possible to get more appropriate guidelines in place for autistic people, these remedies do not absolve government of an obligation to do better.
For whatever reason, Boris Johnson and his enablers chose to abdicate their responsibility to plan for this crisis. To be fair, Mr. Johnson seems incapable of ever taking responsibility for anything, but surely this character defect is not universal in his cabinet. ￼
The delays caused actions to be taken with unseemly haste, and the government must be held to account for the discriminatory consequences of their inaction.