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Summary

Alireza, 22, has cerebral palsy. He uses a wheelchair and can only use his right hand. He had to drop out of school at 15 because there was no way for him to reach classrooms on the upper floors of the school or use the toilet. Before that, he relied on other students or cleaning staff to carry him and his wheelchair, but as he gained weight, this became impossible. For his entire life he has relied on his mother, now 65, to use the toilet, shower, and get dressed. His mother suffers from severe backpain that sometimes keeps her in bed for weeks. Alireza said:

I really feel ashamed when she struggles to help me, so I try to minimize my requests for help. I wish I could have someone else to assist me. But the State Welfare Organization, which is responsible for supporting us, does not care about us. They just pay me this monthly allowance [the equivalent of US$40] with which I can’t even buy one meal per day. I think I can survive only while my mom is alive. The day she is not there for me, I will have nowhere else to go…

Though he enjoys exercising, Alireza rarely leaves home and spends most days watching television. For Alireza, just reaching the sports club requires overcoming multiple barriers. Public transport near his home – including buses or metro – are not accessible for someone like Alireza who has a physical disability. Seeing his wheelchair, taxi drivers rarely stop to pick him up, and when they do, charge extra to put his wheelchair in the trunk. “I think most people, and especially those in charge, often forget that we are equally human,” he said.

Like Alireza, people with disabilities across Iran face serious obstacles to participating in daily life activities that most people take for granted, such as going to work or school, gathering with friends or relatives, attending cultural events, shopping for groceries, or visiting the doctor. Inaccessible buildings and public transportation impede independent navigation and participation. People with disabilities confront stigma and discrimination almost everywhere in their daily lives, for example when interacting with state-employed social workers, doctors in hospitals, and public bus drivers. Stigma and discrimination are even embedded in the public policies supposedly aimed to support them. Discrimination in healthcare is also a persistent problem, including the failure to provide people with disabilities full and accurate information about treatments and available options and ensuring that they give informed consent to treatment.

To live an independent and dignified life within society, people with disabilities should have access to services and devices that facilitate their participation in the community on an equal basis with others. People with different types of disabilities require differentiated services. For example, assistive equipment such as motorized wheelchairs and elevators in public buildings may be essential for some. Others may require personal assistance services, whereby a professional assistant supports an individual with daily tasks such as dressing, bathing, cooking, shopping, and participating in other activities. Social protection programs including disability pensions may also be essential for some to secure services that are not provided by the state.

All people with disabilities have the right to access the physical environment, including buildings, roads, schools, housing, medical facilities, workplaces, and other facilities and services open or provided to the public, in both urban and rural areas, on an equal basis with others. People also have the right to live independently and be included fully in their communities. They also have the right to the highest attainable standard of health, including rehabilitation and services specific to their disabilities. The government also has an obligation to raise awareness about the rights and dignity of people with disabilities and to combat stereotypes, prejudices, and harmful practices.

The Iranian government has taken some steps towards improving rights protection for persons with disabilities in recent years. Iran ratified the United Nations Convention of the Rights of Persons with Disabilities (CRPD) in 2009 and began initiatives to investigate and promote accessibility of public buildings, transportation, and other facilities in Tehran and other major cities including through the establishment of the National Headquarters on accessibility in 2015. Most recently, a new law on protection of the rights of disabled people came into force in 2018. However, much more needs to be done.

Through 58 in-depth interviews with people with disabilities and others, Human Rights Watch and the Center for Human Rights in Iran documented discrimination, abuse, and lack of accessibility. We found that the government has failed to provide sufficient community-based services - including quality and appropriate assistive equipment, personal assistance, accessible and affordable habilitation and rehabilitation, and other services - thus violating the right of people with disabilities to live independently and participate in the community. It has also failed to take appropriate steps based on all available resources to develop accessible public transportation and to guarantee equal access to health care for people with disabilities.

Negative stereotypes and discrimination, including among state social workers and medical workers, also impede access for people with disabilities to essential services. As a result, many people with disabilities spend their lives isolated at home and totally dependent on family members or relatives for support for the most basic daily tasks.

Iran is an upper middle-income country with a GDP per capita of US$20,000 in 2016, according to the World Bank. However, senior State Welfare Organization officials have frequently noted that insufficient budgetary support contributes significantly to the lack of services and support for people with disabilities in the country.

There are no official up-to-date statistics on how many of Iran’s roughly 80 million people have disabilities. Government agencies providing services to people with disabilities reported 1.8 million people, or 4.2 percent of the population, registered as having disabilities in 2015. The actual number of people with disabilities in Iran is likely much higher. Some officials in Iran have acknowledged that the actual number of people with disabilities is likely between 11 and 14 percent of the population, or about 9 to 11 million people. Globally, according to the World Bank and the World Health Organization (WHO), approximately 15 percent of the world’s population have disabilities. Stigma and discrimination, a cumbersome and often long registration process, as well as a lack of awareness about their rights, likely contribute to a reluctance among some people to register or among families to register their children. This may be particularly true for women and girls; only 35 percent of people registered as having a disability with the State Welfare Organization are female.

State Welfare Organization Failures

Our research uncovered serious problems in the work of the State Welfare Organization (SWO), the main agency tasked with providing services to people with disabilities. Interviewees described how state social workers insulted and humiliated them. Many people we interviewed stated that social workers did not provide them with sufficient information in a timely manner about services and equipment to which they are entitled to and the procedures for obtaining them.

For the most part, those we interviewed who required assistance in fulfilling basic needs—including eating, getting dressed, or daily hygiene—relied solely on the help of family members or close friends. While family members often play important roles in the lives of people with disabilities, people with disabilities have the right to live independently and be included in the community on an equal basis with others. To ensure this, they should have access to a range of in-home and other support, including personal assistance. None of the people with disabilities interviewed for this report benefited from professional personal assistance (PA). A personal assistant is an individual supporting a person with a disability in different aspects of daily life – such as personal care, household tasks, assistance at school, university, or the workplace, driving, interpretation, and other tasks customized to the individual.

People who did hire individuals to help with personal care reported instances of caregivers not providing professional care, such as improperly inserting a catheter and causing injury, or stealing from them. Government officials have acknowledged the need for greater oversight of companies that offer home care services.

The SWO is responsible for providing assistive devices such as wheelchairs, crutches, and hearing aids. However, many people interviewed said that they encountered excessive waiting times, often up to a few years, and complex procedures to obtain free or subsidized equipment. People who did receive assistive devices found that they were of low quality and did not facilitate their independence. For example, the SWO typically only provides manual wheelchairs. People whom we interviewed who cannot use manual wheelchairs independently said that their only choice was to purchase electronic wheelchairs at their own expense, which many could not afford to do.  

The SWO implements some community-based rehabilitation programs aiming to make services available within communities, particularly in rural areas. However, interviews with people with disabilities in Iran revealed that many of them face various barriers in accessing essential services such as physiotherapy, speech therapy, occupational therapy, and psychotherapy. Often, these services are not available in the communities where they live. Where they do exist, the quality may be poor, or services may be cost prohibitive: neither private nor public insurance schemes in Iran cover these services.

Human Rights Watch and the Center for Human Rights in Iran found that the current disability pension program is discriminatory and has serious shortcomings both in coverage and the amount paid. According to the government, 25 percent of persons with disabilities registered with the SWO, or 321,000 people, received “disability pensions” in 2016. However, many people with disabilities who need financial support do not receive the benefit. Unemployment among people with disabilities is 60 percent. Yet, only those with disabilities diagnosed to be “severe or very severe” are eligible. The lack of sufficient funding also limits the number of people who receive the pension. Some people we interviewed mentioned that SWO staff said that they will remain on waiting lists to receive the pension until another recipient becomes ineligible (finds a job, for example) or passes away. The amount of the pension in the most recent Persian year 1396 (March 2017 to March 2018), 1.48 million IrI (US$39.36), is not sufficient to meet basic needs; by contrast, in the same year, the official minimum wage was six times greater, or 9.3 million Iri ($247.34), which has also been criticized as being too low.  

Discriminatory Laws and Policies

The Iranian government’s approach to disability continues to rely heavily on the medical model of disability, which contributes to discriminate and stigmatize. Until recently, disability was widely understood through the lens of a person’s defect, difference, or illness. People with disabilities were seen as vulnerable, in need of care, or in need of curing. Under the CRPD, disability is understood as an interaction between individuals and their environment, and the emphasis is on identifying and removing barriers in the environment and discriminatory attitudes. This reflects the shift from the “medical model” of viewing disability to a social, or rights-based, model. 

The definition of disability under Iran’s 2004 disability law is unnecessarily restrictive and reflects this medical model, focusing on an individual’s health and functioning as determinants of disability, and qualifying disability as “impairments amounting to continuous and considerable deficiency in their health and general functioning to the level that the person’s social and economic independence is reduced.” The law’s language excludes conditions in some way determined to be “less severe” or non-continuous.

For people with psychosocial disabilities, only those who are identified as having “chronic mental disorders” can be registered as people with disabilities. To qualify, a person must have a condition that has been continuous for the past two years and must have been hospitalized for their psycho-social condition at least once in the last two years.

Iranian legislation uses derogatory and outdated language such as “insane,” “retarded,” “eyeless,” and “crippled.” The government has sought to revise some language in recent years, including by using the terms physical disability and mental disability.

In addition, prevention of disability is one of the main priorities of Iran’s disability policy. The idea of preventing disability reflects an outdated approach to disability which regards disability as an impairment that needs to be cured or fixed. While government actions to improve public health, access to health care services and information, and other policies may result in a reduction in the number of disabilities, prevention of disabilities is distinct from the protection of the rights of people with disabilities.

Inaccessible Public Transportation  

As a result of poor accessibility to public transportation, roads, and buildings, many people with disabilities in Iran we interviewed remain trapped in their homes, unable to live independently and participate in society on an equal basis with others. For example, although there are some buses with ramps accessible for people who use wheelchairs or walkers, some people reported that drivers often do not know how to open the ramp. In larger cities with metros, there are elevators in some stations, but they are often out of service. Some wheelchair users resorted to using escalators, despite the dangers.

For people who are blind, bus stops are not announced, and regular buses may stop outside of designated stops, hindering the ability of a blind person to count stops as a means of orienting in the absence of announcements. At least one blind person has died and several others have been injured while trying to board a train in the Tehran metro in recent years, according to media reports.

People living in smaller cities and rural areas faced particular difficulties in accessing transportation, since public transportation in these locations is either very minimal or does not exist at all, and where it does exist, it is overwhelmingly inaccessible.

Inaccessible Public Buildings

Iran is a highly centralized country and the government regulates nearly all activities. Basic requests can require complex forms, administrative processes, and official stamps. To access most public services in Iran, people need to go in-person to governmental offices. According to SWO, only thirty percent of public buildings in Iran are accessible for persons with disabilities. Even State Welfare Organization offices are typically inaccessible, despite the fact that people with disabilities must visit them in order to receive various services.

People with disabilities interviewed, especially those who use wheelchairs, said that they find the entrances of most public buildings inaccessible, due to stairs without alternative ramps or elevator access. Even when an elevator is available, interviewees said that many elevators were too small to fit most wheelchairs. Blind people or people with low vision reported inaccessible elevators in many public buildings. In some cases, the elevator floor designators or call buttons are not accessible because they do not have braille or vocal indicators.

The Iranian government has made some progress toward making public infrastructure and transportation more accessible, particularly in the capital, Tehran, and some larger cities. It also established the National Headquarters to Follow-up on Accessibility in 2015, which requests reports and information from different government bodies about their efforts to improve accessibility. In recent years, many municipalities around the country have appointed advisors on “citizens with disabilities” or “urban accessibility” some of whom have been people with disabilities themselves.

Lack of Accessibility and Discrimination in Healthcare

Human Rights Watch and the Center for Human Rights in Iran documented multiple barriers impeding the ability of people with disabilities to access health care services on an equal basis with others. The lack of accommodations as well as discriminatory attitudes and a lack of awareness among doctors and medical staff are serious concerns. Further impediments to accessing medical and personal care include a lack of assistive services and equipment, a lack of financial means due to inadequate government support as well as inaccessible transportation and physical infrastructure, including in health care facilities.

Quality and specialized health care services are not provided in some provinces, particularly in remote and rural areas, and people must often travel long distances to reach a medical facility. Upon reaching a hospital or clinic, persons with disabilities often cannot access them because many do not have ramps or elevators. Blind people and those with low vision said that they do not go to health care facilities alone because the buildings are not accessible, and staff do not provide them with accommodations. Deaf and hard of hearing people interviewed said that they cannot use health care services independently due to the lack of sign language interpreters.

Many people with disabilities interviewed said that they faced discrimination from health care personnel, including denial of care. There is no publicly available information regarding any training doctors and other medical personnel receive regarding the rights of people with disabilities.

Access to sexual and reproductive health care and information is difficult for most of the population in Iran. Due to additional barriers, people with disabilities experience particular difficulties accessing these services and information. Women with physical disabilities told us that they rarely visit gynecologists or undergo sexual health preventative care due to financial and mobility restrictions, lack of professional assistance to facilitate doctors’ visits, or lack of information about the importance of this care.

We documented many cases in which doctors and other healthcare professionals did not seek or obtain the informed consent of their patients and did not provide them with comprehensive information about the treatment or potential side-effects in a fully understandable format, or often at all. For adults with disabilities, medicine and treatment should be delivered with the consent of the individual being treated. The CRPD requires health professionals to provide care of the same quality to people with disabilities as to others, including on the basis of free and informed consent.

For example, according to mental health professionals in Iran whom we interviewed, Electroconvulsive Therapy (ECT) is often carried out unnecessarily, or for conditions in which ECT is not likely to be helpful, and without the informed consent of the person receiving the treatment. ECT consists of passing electricity through the brain to induce a seizure and is used in mental hospitals in many countries to treat bipolar disorder and severe depression.

People with psychosocial disabilities interviewed said that they learned about ECT by experiencing it several times. For example, Jafar, a man with psychosocial disabilities, said, “The first time I had electroshock, a heart physician visited me the day before. Then, they took me for the shock and it was only then that I learned how it was. I forgot many things after that. They did it every other day. Now, I know how it is and what happens afterwards.”