Séverine was told by a doctor that she would be less of a priority for treatment, because she is autistic. Alice Jorge had to choose between receiving care from a support nurse infected with COVID-19, or no care at all. In Romania, a psychiatric institution locked up 242 of its residents in a separate building when they were found to be infected instead of sending them to the hospital – as the guidelines dictate.
I, as the communications coordinator for the European Disability Forum, have been following the COVID-19 impact since beginning of March. It has not been encouraging. Seeing how governments systematically forgot about persons with disabilities, how little support was given and how much pain and problems that created left me very discouraged. Persons with disabilities have been discriminated, isolated, forgotten and subject to multiple and severe human rights violations since the beginning of this crisis.
This blog post outlines the main violations we have seen all over Europe and identifies where the proactive help of equality bodies is most needed to detect, denounce and end discrimination.
The overwhelming fear of the disability community came true: de-prioritisation on access to treatment because of disabilities. We saw this in theory with clearly discriminating guidelines from Italy, Spain and UK. We saw this in practice: a residential institution in Alsace called 5 times for 5 residents and no ambulance ever came. UNIA, the Belgian equality body denounced an incident where a person with intellectual disabilities was kicked out of the hospital because she cried a lot. Séverine, an autistic person, was told she would not be treated if she had COVID-19.
Isolation rules in hospitals also cause added problems for persons with disabilities: it means that interpreters, support workers or family members cannot be in the hospital to support persons with disabilities. This isolation also means that cases of de-prioritisation often go unreported.
We need the support of equality bodies to identify and denounce this discriminatory situation, exactly as UNIA did.
We need them to denounce discriminatory guidelines for healthcare professionals and we need to work together to ensure that cases of discrimination are identified, denounced and ended.
In a statement published at the end of April, the UN High Commissioner for Human Rights, Michelle Bachelet, said that “Persons with disabilities face even greater threats in institutions, as care facilities have recorded high fatality rates from COVID-19 and horrific reports have emerged of neglect during the pandemic.”
This is the very sad reality in Europe. Persons with disabilities in residential institutions are more likely to get infected. They are also more likely to suffer abuse and neglect, in part due to staff shortages and shortage of protective equipment. They are suffering alone, locked in their rooms, often with no contact to the outside world. Governments further isolate persons in residential institutions often denying them the possibility to leave the institution, instead of providing human rights-based guidance and protection.
This isolation leads to no possibility to report and denounce abuse and neglect. Proactive action from equality bodies and organisations of persons with disabilities is essential: we need to make sure discrimination against people with disabilities can be identified and reported. We also need to lobby for independent living. Persons with disabilities should not be forced to live in institutional settings. Living in these residential institutions without any other alternatives is, by itself, a form of discrimination.
As denounced by several national Equality bodies, when implementing lockdown measures, governments took measures without consulting or even thinking about how they affected persons with disabilities. Alice Jorge’s story illustrates how numerous persons with disabilities lost support and are more isolated than ever, without access to personal protective equipment to them or their support networks.
This is compounded by authorities often not understanding that disability support workers work at people’s home: we, at EDF, heard cases of police stopping and turning back workers, because they didn’t understand a client’s home is a place of work.
Many were deeply affected: persons with intellectual disabilities, psychosocial disabilities, mental health issues, autistic people struggled with the very restrictive lockdown conditions. Even when rules were relaxed they faced discrimination from their neighbours and fines from authorities.
Most persons with disabilities have seen their access to food and other goods drastically curtailed, often having to rely on the kindness of strangers to receive food that they cannot pick up. This is even if they have money for the food: poverty was already high among persons with disabilities (28.7% in the EU) and according to all projections, will just get higher.
Lockdown measures didn’t consider support for persons with disabilities either: support services are largely not receiving additional funding and many had to close. Remote education methods are not accessible and are not adapted to persons with disabilities. We, at EDF, received many complaints about students with disabilities being left alone and with no support. In the cases that they do have support, it is provided by non-profit services with little help from authorities. This creates a postcode lottery: those students with disabilities that are lucky enough to live in an area with good services will still be left behind, but less behind that other students with disabilities.
Lockdown measures have clearly exacerbated an already discriminatory environment, ramping up existing ableist attitudes in society. It is essential that Equality bodies proactively educate and raise awareness to these discriminatory attitudes and how they affect the lives of persons with disabilities.
Cases of domestic violence rose by a third after lockdown measures. Women and girls with disabilities are already more likely to suffer violence and abuse so this is very concerning. In addition, most available support and helplines are not accessible and information about them is not provided in accessible formats: this leads to women and girls having no access to help, left alone and isolated in an abusive environment.
Equality bodies have raised concerns about the raise of domestic violence and abuse and they need to continue to do so and should pay specific attention to those more vulnerable, such as women and girls with disabilities. The response should include accessible information, accessible helplines and accessible shelters. Equality bodies should also create specific information campaigns for women and girls with disabilities. Why specific campaigns? When the standard is exclusion, it is normal to think that helplines and shelters are not accessible. We need specific, targeted information to reach women and girls with disabilities so they know what is accessible to them.
Most governments didn’t think about accessibility when enacting the crisis response. In fact, organisations of persons with disabilities had to spend extra time and energy just to ensure sign language interpreters, captioning, and accessible information for their members. Many had to prepare accessible information themselves, without support or budget from the government or authorities.
This is discrimination concerning access to information. It is systematic and it was only addressed after a lot of advocacy and complaints, both by organisations of persons with disabilities and human rights organisations.
We need to stay vigilant and ensure these hard-won accessibility measures are not rolled back. We also need to ensure that governments have systems in place so that we don’t need to fight for every piece of accessibility information. National Equality Bodies have raised concerns in this regard, having received several complains about the need to provide accessible materials regarding the emergency measures.
We are already seeing that persons with disabilities are being forgotten by governments in this next phase of exit/deconfinement strategies. A main concern is, for example, the requirements to use masks that impacts deaf and hard of hearing people, who rely on facial expressions and lip reading.
Additionally, the Austrian Disability Ombudsman has raised the difficulties that the mandatory mask use poses to persons with respiratory deficiencies. A recommendation has been issued in this regard to carry an official doctor letter certifying the difficulties that would pose.
Imposing physical distancing measures is also impossible to many persons with disabilities, especially in employment and education. In some places, authorities are imposing measures such as “one way streets” that are not marked accessibly, leaving blind and partially sighted people lost and confused.
Contact tracing apps are another issue: besides the privacy issue and possible collection of health data, they may also not be accessible to persons with disabilities. This may mean everyone except a person with disabilities will be notified if they entered into contact with a suspected case.
Some countries did include persons with disabilities in their taskforce for exit strategies: this is a positive step, however it should be done by all governments and should have been done since the beginning of the crisis.
Equality bodies are closely monitoring exit strategies and taking action where needed regarding new discrimination incidents against persons with disabilities.
As part of our fruitful cooperation with Equinet and Equality Bodies, we ask equality bodies to take the lead in reaching our members in order to make sure that the needs and challenges that persons with disabilities are going through are adequately addressed. It is therefore essential that equality bodies and organisations of persons with disabilities work together and coordinate their response. Even if different action points were raised in this blog post, only national and local organisations of persons with disabilities will know what applies to their specific geographical context. Organisations of persons with disabilities have been, since the beginning of the crisis not only advocating but also providing on-the-ground support, filling the gaps left open by governments.
National Equality Bodies have an important role in denouncing unequal treatment lack of accessibility, issuing recommendations to governments regarding infringement of human rights of persons with disabilities, such as the right to access to healthcare, to access to basic support services, difficulties in access to shopping, cuts on funds allocated to persons with disabilities and more. For a more complete view of the actions taken by Equality Bodies in this regard, please consult the Equinet database. We hope equality bodies increasingly work together with organisations of persons with disabilities to guarantee that the rights of persons with disabilities are ensured by governments in the future.
Our motto is “Nothing about us without us”. Equality bodies need to help us make it a reality.
The Association for Montioring Equal Rights in Turkey has translated this post into Turkish. You can access it on their webpage.
The views on this blog are always the authors’ and they do not necessarily reflect Equinet’s position.