Update 'content/session/disabilityinthepandemic.md'

content/session/disabilityinthepandemic.md

@@ -6,7 +6,7 @@ images: ["/topic/coronanotes/care_curve.jpg"]
 
 # A history of struggle against the disposability of disabled lives
 
-People with disabilities or chronic illnesses have been long subject to a denial of care. No matter where we are, we had to contend with the shortfalls in medical treatment, adaptation of built environment, access to assistive technologies, personalised assistance and many other unmet requirements. However, we have equally been subject to imposition of care. We had to wrestle our autonomy away from familial overprotection, forced institutionalisation and segregation in specialised institutions. There is a long history of our communities organising and struggling to overcome this double -- objective and subjective -- disablement.
+People with disabilities or chronic illnesses have been long subject to a denial of care. No matter where we are, we have had to contend with the shortfalls in medical treatment, adaptation of built environment, access to assistive technologies, personalised assistance and many other unmet requirements. However, we have equally been subject to imposition of care. We have had to wrestle our autonomy away from familial overprotection, forced institutionalisation and segregation in specialised institutions. There is a long history of our communities organising and struggling to overcome this double -- objective and subjective -- disablement.
 
 ## Social model of disability and disability rights movement
 
@@ -16,6 +16,8 @@ From this critique emerged an integrative, social model of disability,[^0] which
 
 From this enlarged understanding of disability, the disability rights movement in the 1970s initiated a cycle of protests, campaigns and direct actions, inspired and supported by the larger civil justice and labour movements, that contested the power of economic interest and paternalistic institutions to demand an unconditional recognition of disability rights and creation of inclusive institutional settings. People with disabilities had a right to individually and collectively define their own requirements and a right to pursue independent living.
 
+![Ed Hall's banner at the Peopel's Museum in Manchester](/topic/coronanotes/disability.jpg)
+
 ## Radical model of disability and continuity of struggle
 
 While the social model initially had emphasised the structural exclusion and relations of power, through its successes over the next two decades, it increasingly narrowed its focus on disability as isolated from other forms of structural oppression. It also largely ignored the relations of (inter-)dependence that continued to be constitutive not only of the lives of many people with disabilities who required care and assistance but also of the entire able-bodied population in various forms throughout their lives. From these shortcomings, in the 1990s emerged the radical model of disability that rested on the understanding of disability as one of many different ways of being, foregrounding positive identification, self-empowerment, intersectionality and queering, cripping and madding of the ableist society.
@@ -38,23 +40,23 @@ First, public health measures, protocols and messaging frequently do not include
 
 For instance, in public guidance, we are typically lumped together as "other at-risk groups". While the disability and chronic illness often come with the prospect of limited mobility and living a life largely confined to home, many among us depend on regular professional or family assistance and therefore cannot simply maintain distance and isolate as advised by the public health guidance. Given that care workers typically assist more than one person and work in more than one institution, forced to do so by low wages and precarious work arrangements, they are themselves both at risk of getting infected and transmitting the infection.
 
-**For such reasons, public health protocols, guidance, messaging and hotlines need to be put in place that will be specifically aimed at reducing the risk of infection for people with disabilities and assistants. Also, social protection measures need to be put in place to have additional assistants at hand, to guarantee that all assistant work -- professional or not -- during the pandemic is paid and that assistants can get sick paid in the case they get sick.**[^4]
+**For such reasons, public health protocols, guidance, messaging and hotlines need to be put in place that will be specifically aimed at reducing the risk of infection for people with disabilities and assistants. Also, social protection measures need to be put in place to have additional assistants at hand, to guarantee that all assistant work -- professional or not -- during the pandemic is paid and that assistants can get a sick pay in the case they get infected.**[^4]
 
-Furthermore, the sense that there is a continuity of making disability and chronic illness invisible in inadequate public health measures and messaging is only reinforced by the contrast we can observe what societies are willing to do to create accommodations for able-bodied people who now have to live and work confined mostly to their homes and thus depend on the essential work of others. Under different circumstances, for our lives, those accommodations are simply not be had.
+Furthermore, the sense that there is a continuity of making disability and chronic illness invisible in inadequate public health measures and messaging is only reinforced by the contrast we can observe in what societies are willing to do to create accommodations for able-bodied people who now have to live and work confined mostly to their homes and thus depend on the essential work of others. Under different circumstances, for our lives, those accommodations are simply not to be had.
 
 ## Availability of critical medical supplies and medical treatment
 
-Second, people with disabilities or chronic illnesses frequently require oxygen tanks, ventilators and protective equipment such as masks and gloves. However, at present these are in short supply and **a failure to include among priority receivers the people with disabilities or chronic illnesses when securing these supplies might aggravate the existing health conditions and increase the vulnerability**.
+Second, people with disabilities or chronic illnesses frequently require oxygen tanks, ventilators and protective equipment such as masks and gloves. However, at present these are in short supply and **a failure to include among priority receivers people with disabilities or chronic illnesses when securing these supplies might aggravate existing health conditions and increase vulnerability**.
 
-The vulnerability is also increased for those among us who need to visit hospitals for medical treatments such as dialysis or therapy for critical acute conditions. **Hospitals have to plan in advance such emergency capacity and make arrangements to reduce the risks of transmission to disabled out-patients**, which might become difficult if an outbreak overwhelms the capacities of hospitals.
+Vulnerability is also increased for those among us who need to visit hospitals for medical treatments such as dialysis or therapy for critical acute conditions. **Hospitals have to plan in advance such emergency capacity and make arrangements to reduce the risks of transmission to disabled out-patients**, which might become difficult if an outbreak overwhelms the capacities of hospitals.
 
-Most at risk are those among us, however, who are in nursing homes or boarding schools. These institutions should have procedures in place and be subject to stricter supervision, particularly if they are privately managed, to avoid cases of massive neglect and defection of nursing staff as has happened in some nursing homes in Spain.
+Most at risk are those among us, however, who are in nursing homes or boarding schools. These institutions should have procedures in place and be subject to stricter supervision, particularly if they are privately managed, to avoid cases of massive neglect and defection of nursing staff as has reportedly happened in some nursing homes in Spain.
 
 ## De-prioritising and triage
 
-Third, as a sudden spike in the need for beds, ventilators or medical staff threatens to overwhelm the healthcare system, public health authorities and hospitals are forced to make hard decisions how will the insufficient resources be allocated between patients requiring critical care. On principle, those who have smaller chances of recovery given their underlying health condition or their clinical outlook are de-prioritised. As the harrowing situation in Lombardy has demonstrated, doctors have no other choice but to follow such guidance when making a triage whom to place on the ventilator support and whom to let die.[^5] The danger here is that people with disabilities or chronic illnesses are implicitly de-prioritised. In fact, in some U.S. states, such as Alabama and Tennessee, critical care plans explicitly de-prioritise people with an intellectual disability or spinal muscular atrophy, assuming their lives are worth less.[^6]
+Third, as a sudden spike in the need for beds, ventilators or medical staff threatens to overwhelm the healthcare system, public health authorities and hospitals are forced to make hard decisions on allocation of insufficient resources between patients requiring critical care. On principle, those who have smaller chances of recovery given their underlying health conditions or their clinical outlook are de-prioritised. As the harrowing situation in Lombardy has demonstrated, doctors have no other choice but to follow such guidance when doing triage whom to place on ventilator support and whom to let die.[^5] The danger here is that people with disabilities or chronic illnesses are implicitly de-prioritised. In fact, in some U.S. states, such as Alabama and Tennessee, critical care plans explicitly de-prioritise people with an intellectual disability or spinal muscular atrophy, assuming their lives are worth less.[^6]
 
-**People with disabilities or chronic illnesses are thus de-prioritised and made disposable in two ways: first because of their greater needs requirement when it comes to the medical supplies and treatment -- and then when it comes to critical care because of their underlying conditions.** For these reasons, the American Association of People with Disabilities has sent a letter to Congress demanding "a statutory prohibition on the rationing of scarce medical resources on the basis of anticipated or demonstrated resource-intensity needs." [^6] Otherwise, the discrimination and disposability of lives will get perpetuated through the measures that are designed to save lives in the first place.
+**People with disabilities or chronic illnesses are thus de-prioritised and made disposable in two ways: first because of their greater needs requirement when it comes to medical supplies and treatment -- and then when it comes to critical care because of their underlying health conditions.** For these reasons, the American Association of People with Disabilities has sent a letter to Congress demanding "a statutory prohibition on the rationing of scarce medical resources on the basis of anticipated or demonstrated resource-intensity needs." [^6] Otherwise, the discrimination and disposability of lives will be perpetuated through the measures that are designed to save lives in the first place.
 
 # "Nothing About Us Without Us!"