China’s prevention policy for people with disabilities during the COVID-19 epidemic

Abstract

During the COVID-19 pandemic, people with disabilities are a high-risk group, but they are also the group that is most easily ignored by public policy. Non-disabled people might not be able to imagine how many barriers disabled people encountered during this challenging period. This paper focuses on the barriers encountered by people with disabilities in China and the adjustments made to public policies in response. A deeper, social-physiological factor which should also be responsible is overlooked, and that is the ‘empathy deficit’. Human rights and empathetic attitudes should go hand in hand with each other when formulation and implementation of welfare security policies for persons with disabilities during a major public health crisis.

Keywords:

• COVID-19
• disabled people
• policy
• China

Introduction

As of 19 May 2021, over 3.39 million deaths have been reported globally, of which 4860 were reported in China according to World Health Organization. Zhang Haidi, chairman of the China Disabled Persons’ Federation, pointed out at the UN ESCAP meeting that people with disabilities are more severely affected by COVID-19 than others, and the barriers and inequalities they face have further increased. If sign language or subtitles are not added, some hearing-impaired people cannot understand relevant information; visually impaired people need to touch braille to read and touch objects to judge what they are, which makes the recommended protective measure ‘washing hands frequently’ not easy to follow; China’s strict quarantine also poses great challenges to disabled people’s daily care. According to the official website of Hongan County, Hubei Province, a 17-year-old teenager with cerebral palsy died due to being left alone at home while the individual’s family was quarantined due to COVID-19 infection. What we are concerned about is what people with disabilities are facing during the COVID-19 epidemic in China?

Why did governments addressing the global public health crisis not specifically protect the particular group of people with higher health risks from the beginning? Most studies attribute this problem to China’s authoritarian system, which is that the top-down policy lacks flexibility and easily neglects people with disabilities. (Zhou, 2010) While this paper hopes to add a point about this problem from an angle that is rarely included in current discussions—the reduction and lack of social empathy. We argue that the root cause of people with disabilities being neglected by disease prevention policies is that policymakers lack of empathy. Empathy is the ability to think of others and was first proposed by Carl Rogers, the founder of humanism (Rogers, 1975). Alberta Szalita, a psychiatrist at Columbia University, notes that ‘empathy is one of the important mechanisms through which we bridge the gap between experience and thought’ (Szalita, 2001). The following paper will focus on combining the plight of the groups with disabilities and the latest policy adjustments in China. We believe that to avoid the recurrence of tragedies, the empathy of policymakers towards disabled people must be awakened.

Neglect of disabled people by the prevention policy early in the epidemic

The epidemic outbreak began during the Spring Festival (late January), the most important holiday in China. Due to the unprecedented contagion rate of COVID-19, the epidemic prevention campaign rapidly expanded from Hubei Province to the whole country, and all of China entered a dire state of survival at all costs. Under the instructions of the central government, governments at all lower levels established a strict anti-epidemic chain from provinces, cities, counties, and townships (streets) to neighbourhood committees (village committees). Specific measures included reducing population mobility, wearing masks, extending holidays, cancelling gatherings, screening body temperatures, and monitoring QR codes. However, not enough attention was paid to the fact that these measurements would affect people with disabilities that require daily care and medical treatment. In this section, we will analyse some specific cases that mainly from local government websites and newspapers.

The first challenge for people with disabilities is daily care. Because COVID-19 is very contagious, patients must be escorted to certain medical institutions for quarantine. As mentioned earlier, the 17-year-old teenager was a cerebral palsy patient who needed to be fed and taken care of around the clock. However, due to the risk of infections, the village leaders could not find anyone to take care of him. Some volunteers from other cities wanted to take him out of the village, but the government response to the epidemic was too severe at that time, roads around the village were blocked. On the sixth day of his family’s quarantine, the teenager, who was left alone at home, died. This incident brought great shock to the whole country, and people realized that people with disabilities may need more support than the average person.

The second challenge is medical treatment. The key to China’s prevention and control policy is to reduce mobility, that is, people are required to stay home except when buying food or medicine. However, for people with disabilities, access to critical medicines became more difficult. After Yunmeng County was locked down, a patient with reflex epilepsy, only had enough medicine for three days. Once she stopped taking this medicine, she could die of her illness at any time. After many attempts, finally she got the medicine with the help of concerned citizens online. Another case is, according to Beijing Spinal Muscular Atrophy Care Center, a disabled girl with spinal muscular atrophy in Wuhan, was infected with COVID-19. Due to physical inconvenience and the lack of medical resources, she could not find a hospital where she could be treated. Similarly, she finally obtained medical treatment only after asking for help from the media.

The third challenge is communication. In Wuhan, there are 13,000 hearing-impaired people. These people might not be able to obtain critical up-to-date information about the epidemic due to inaccessible communication. According to National Health Commission, as of 27 January 2021, 100,498 people have been infected with COVID-19 in China, and the death toll is 4818. Hubei Province, where the epidemic first appeared, totally has 68,150 positive cases and 4512 deaths. Making this situation worse, to avoid infection, family and providers of sign language translation are not allowed to accompany patients, which leads to more barriers for these disabled people to communicate with doctors. For example, a hearing-impaired patient said that he can only communicate with doctors reliably through writing and often pretend to understand some professional terms.

New progress in the prevention policy for disabled people

These tragedies sound the alarm about the need for changes. The substantial pressure of public opinion contributed to the policy adjustments (Zhang, 2012). At the top level, the central government has altered the original policy and responded to the needs of people with disabilities. Up until now, there has been three stages of policy adjustments: Rescue, Recovery, and Prevention.

Stage 1: rescue. On 11 February 2020, the China Disabled Persons’ Federation issued a notice to the local governments to provide care services and medicine delivery for the disabled whose relatives and guardians are unable to take care of the disabled. On 17 February 2020, the State Council issued a notice to the local governments to increase the distribution of assistive equipments such as wheelchairs and crutches. On 6 March 2020, the Central Leading Group proposed that for people with disabilities who need assistance, their local communities should be responsible to provide care and subsidies. These policy adjustments have been well implemented and played a critical role in providing urgent medical services for persons with disabilities during the epidemic.

Stage 2: recovery. On 16 April 2020, the Ministry of Civil Affairs and the National Health Commission issued a joint statement, suggesting that local governments should organize community service institutions and volunteers to provide care, delivery and other services for people with disabilities. This further encouraged local governments to provide additional care services to people with disabilities during the epidemic. For example, some provinces have provided financial subsidies to low-income disabled people and welfare institutions.

Stage 3: prevention. On 20 October 2020, nine central departments of the Chinese government jointly issued the ‘Guidelines for the Protection of Disabled Persons with Major Infectious Diseases’. It provides general guidelines for the self-protection of people with disabilities in their families, communities, and service agencies during periods of major infectious diseases. Comprehensive and systematic regulations were issued, such as home protection for the disabled, community protection and protection for disabled service organizations. This is the most recent policy of China’s epidemic prevention for people with disabilities.

Summary and discussion

After the media exposed deaths of disabled people, China’s central and local governments have issued various protection policies involving cash subsidies, material supplies, daily care, employment assistance and so on. These measures have mitigated the impact of the epidemic on people with disabilities.

However, quelling the crisis does not mean the crisis is over. Reviewing policy loopholes is essential to improving the administrative capacity of governments. It should be recognized that the current policy improvement for people with disabilities actually originate from the public pressure brought about by tragedies. That is a negative circularity of events: the exposure of tragedies of people with disabilities is followed by an outcry of public opinion, which leads to the response of the central and local governments until the next tragedies are revealed and the process repeats itself. The consequence of this circle is that ex post facto rescue requires more than prior prevention. To change this dilemma, it is essential to take people with disabilities into account at the beginning of policy formulation. It is important for policy makers to have empathy towards people with disabilities and eliminate policy loopholes that neglect the disabled.

We have learned our lessons from the COVID-19 crisis. We should strike a balance between empathy and human rights, because they are equally important. When dealing with major public crises in the future, normative values such as empathy and care for the most vulnerable of society should be instilled into the policy process in order to firmly anchored our believe in protecting human rights for all.

Disclosure statement

No potential conflict of interest was reported by the authors.