[A]ny person who, based on diagnosis of the SWO Medical Commissions, has physical, intellectual, mental, or multiple 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.[108]

This definition reflects a medical model by focusing on an individual’s health and functioning as determiners of disability. It also suggests that the government excludes conditions as disabilities in some way determined to be “less severe” or non-continuous. SWO Director Anooshiravan Mohseni Bandpei confirmed in a 2016 news interview that “only those having severe or very severe disabilities are covered by the SWO.”[109] SWO Rehabilitation Director Hosein Nahvinejad described the government’s approach as:

In our definition, only a person who has an impairment hindering their life course and requires rehabilitative interventions is accepted as a disabled person. Based on field studies … we found that 2 percent of the population have higher than moderate level of disabilities requiring rehabilitation.[110]

For persons with psychosocial disabilities, only those who are identified as having “chronic mental disease” are registered as persons with disabilities with the SWO. A person with a “chronic mental disease” is defined by having a psychological disease that has been continuous for at least the past two years and who has been hospitalized for their mental condition more than once in the last two years. The individual must also currently face social or professional dysfunction.[111]

As a result of this overly restrictive definition, a large number of persons with psychosocial disabilities are not able to register with the SWO and receive SWO services. According to a 2011 Ministry of Health study, 23.6 percent of 15 to 64-year-olds in Iran (12.5 million persons) had some mental health condition.[112] However, only a very small number of persons with mental health conditions, approximately 103,000 persons who have been assessed as having “chronic mental diseases” are currently registered with the SWO and thus eligible for support services.[113]

Farah, a woman with psychosocial disabilities, said she has not been able to register with the SWO because she refused to be hospitalized. She said, “My mom worked in a mental hospital for many years and knew that they used electronic shock [Electroconvulsive Therapy] there. She didn’t want me to go through it, so I was never hospitalized and then never got the chance to register with SWO.”[114]

Prevention of Disability

Human Rights Watch and the Center for Human Rights in Iran found that preventing disability is one of the main priorities of Iran’s disability policy. In a 2015 speech SWO Director Anooshiravan Mohseni Bandpei said, “We should use medical science evidence to remove disabilities and decrease the number of disabled persons to the least possible.”[115]

Including disability prevention as a component of the government’s policies and programs on disability reflects a medical approach to disability as something 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. Some aspects of the current disability prevention policies are incompatible with Iran’s commitments under the CRPD.  

For example, the SWO provides free or affordable cochlear implant surgeries for people who are deaf but does not allocate sufficient support for professional sign language interpreters, including in courts, hospitals, or other critical situations. While cochlear implantation may be an option for some very young deaf children, the government should ensure that the resources allocated to promote disability rights are not disproportionately allocated to treatment procedures.

Sohrab is a young deaf man and activist who explained,

State Welfare Organization officials encourage cochlear implantation a lot. They pay part of the surgery expenses. But if we ask them to train sign language interpreters, they say they don’t have money. They tell us that they have limited resources and that we need to improve our remaining hearing instead of using sign language. Instead of supporting us, they want to eliminate us. They want all deaf persons to disappear. The day my heart really broke was the day I heard my favorite actress say, “We pray to God that one day, there are no more deaf people in Iran.” The highest priority is to prevent our existence or cure our conditions to the extent possible rather than supporting us to fulfill our capabilities.^[116]

In the agreement concluded between representatives of the deaf and hard of hearing community and the SWO in March 2016 (see annex 2), the SWO has committed to provide clearer and more accurate information about cochlear implantation surgery.

Iran’s policy on prevention of disability has other problematic aspects, including compulsory pre-marriage genetic screening, which has been in effect nation-wide since early 2018. To register a marriage, couples must provide a certificate documenting a genetic consultation.[117] While the law does not prohibit marriage based on the outcome of the consultation, it violates the right to the respect for private and family life. For people whose disabilities have a genetic component, this can have a potential disproportionate impact on their rights to marry and have a family. The CRPD Committee had recommended that the Iranian government withdraw this legislation, which was in draft form at the time of Committee’s consideration.[118]

IV. Inaccessible infrastructure

The transportation system here is so weak and difficult to use even for those who do not have to use a wheelchair. The sidewalks are also a real catastrophe. So, I have no choice but to ask others to do my stuff for me while I spend most of my days trapped in my room.[119]
—Hassan, 27, wheelchair user with muscular dystrophy, May 12, 2017

As a result of the poor accessibility of Iran’s public infrastructure and transportation, people with disabilities in Iran we interviewed often remain trapped in their homes, unable to live independently and participate in society on an equal basis with others. While many interviewees reported that in recent years the Iranian government has made some progress in making public infrastructure and transportation more accessible, especially in Tehran and larger cities. However, the interviewees noted that it is still far from being fully accessible.[120] Iranians with disabilities who live in rural areas face particular difficulties as there is limited physical accessibility of public infrastructure and transportation in these areas.[121] Authorities have also not consistently provided accessibility for all types of disabilities; for instance, new buses in some major cities are now equipped with ramps for wheelchairs to board. Yet, these buses lack audio systems to announce current and upcoming bus stops, which are essential for people who are blind or have low vision.[122] 

Public Transportation

Tehran is home to the country’s first underground rail system, which serves over eight million people a day. The capital city also has a four-line Bus Rapid Transit system (BRT) that serves 1.8 million people daily.[123] Underground rail systems now are present or under construction in other major cities, including Shiraz, Mashad, Isfahan, Tabriz, and Ahvaz.[124] Some important developments in accessibility in major cities include the installation of about 40 tactile directing lines in 104 of Tehran’s metro stations to facilitate accessibility and safety for blind people; adjustable doorsteps on some new buses in major cities, including Tehran’s BRT to allow wheelchairs to board; and braille signs at some bus stops.[125]

However, for many persons with disabilities, public transportation is either wholly inaccessible or extremely challenging to navigate—either due to the complete absence of accessible infrastructure or because existing infrastructure does not always work. Consequently, many persons with disabilities interviewed never navigate public transportation without help.

People interviewed living in smaller cities and rural areas faced even more difficulties in accessing transportation, since there is typically minimal or no public transportation in these locations and, where it does exist, it is overwhelmingly inaccessible. Most people in these locations in Iran rely on different types of taxis. For people with certain disabilities, however, this is often not an option as they are not accessible, and drivers may charge more for people with disabilities, such as transporting a wheelchair.[126]

Bus system

Many persons with physical disabilities who use wheelchairs said that they rarely use the bus system.[127] Those who do attempt to use buses often rely on the help of strangers, family members, or friends. Both BRT and regular buses generally are not accessible for many persons with disabilities. Few buses have adjustable doorsteps to allow people who use wheelchairs, crutches, or walkers to board.[128] The platforms for boarding BRT buses often have steps to reach them and do not have ramps.[129]

Many said that even when a bus is equipped with adjustable doorsteps, drivers often do not know how to adjust the door and open the ramp.[130] For example, Hassan, a 27-year-old wheelchair user in Karaj said, “When I explain to them the existence of a ramp, or when my mother opens it, drivers and other passengers are often surprised. They tell us that they were not aware of such an option before.” Hassan described one incident when his mother was trying to open the ramp for him to board the bus, the bus driver closed the door and left Hassan on the platform with his mother on the bus. [131]

Fatemeh, a woman with a physical disability who uses a wheelchair, said, “When I notice that people do not have the time or knowledge to open the ramp, I ask someone to lift me on and off the bus in my wheelchair. It’s really difficult. Sometimes I have to let five or six buses pass, before I can get assistance to board the bus.[132]

Metro system

People we interviewed faced barriers in accessing the metro system in the cities where they live. Even where elevators do exist for the metro, they are often out of service. Hassan, who uses a wheelchair, said, “It happened a lot that upon arriving at the [metro] station, I realized that the elevator was broken. So, I had to change my route to find a working elevator.”[133]

Despite these barriers, some persons with physical disabilities who use wheelchairs said that since the metro is fast and more affordable, they continue to use it. They plan their route to use stations that have elevators but may need to change trains more than once or travel some part of the way along sidewalks which could add significant time to their commute.[134]

Some persons with disabilities shared that they even resort to using escalators despite the significant dangers. Hassan said:

I tried to avoid using escalators, but sometimes I had no other choice. With my heavy electronic wheelchair and my heavy body, getting on the escalator was indeed a suicide [mission]. Once, I almost fell down. Had I not been lucky, I could have sustained a deadly injury.[135]

Fatemeh, who uses a wheelchair, said,

I know it’s very dangerous. Each time I get on an escalator with my wheelchair, I prepare myself for death. But I have no other choice. I have nobody to help me.[136]

Upon reaching the platform, persons who use wheelchairs may have to ask other passengers to help them pass the gap between the train car and the platform. The same is often true upon reaching the destination station to get off the train.[137]

The Bavar Association, a prominent nongovernmental organization advocating for persons with disabilities in Iran, maintains a database of accessible transportation stations, health clinics, and government offices in the city of Tehran and some other cities. According to their map, as of October 30,2016, out of some 82 metro stations in the province of Tehran, only 11 stations were fully accessible for people with physical disabilities and blind people and five more were partially accessible.[138]

Obstacles for Blind People

Blind persons are hampered by the lack or low quality of tactile tiles or paving (raised bumps and ridges) on metro and bus station floors to help guide them while walking.[139] Most blind persons interviewed said that they avoid using buses because buses often stop before or after the designated area, and the bus stops are not verbally announced. Regular buses may stop between designated stops to let passengers get on and off, which hinders the ability of a blind person to count stops as a means of orienting in the absence of announcements.[140]

The lack of tactile strips or tiles indicating the platform edge is dangerous for people who are blind, and the absence of this critical safety measure has led to serious accidents and at least one death in the Tehran metro. In October 2010, a blind teacher and mother of two was struck and killed by a train after falling off the platform and onto the rails in Tehran’s Khazaneh station.[141] In 2014, a blind man was injured after falling from the platform in Tehran’s Hassanabad station. He told the Iran Sepid newspaper,

I went to the platform and thought that the train I could hear was the one I should get on… but it was for the other side. So I stepped forward and fell on the platform instead. If they hadn’t taken me off [the tracks], I wouldn’t be alive.[142]

In 2016, Tehran Metro officials reported that all station staff, including the heads of stations, are now required to approach persons with disabilities and others who might need help in navigation and assist them in boarding trains.[143] Yet, this step is insufficient to ensure the safety of people who are blind or have low-vision in metro stations.

Blind persons also described various barriers on sidewalks that made them difficult and even dangerous to navigate.[144] For example, Laleh, a 29-year-old blind woman, told us about the barriers she encounters in Tehran: motorbikes parked on the sidewalks, potted plants, holes in the sidewalk, stairs, and uneven ground. She said:

I can’t count how often I have hurt my arm by bumping into motorbike handles, or hit my head or chin on something, or fallen into an uncovered ditch. I call some of these sidewalks “death stations.”[145]

Laleh said that she sometimes chooses to walk on the street to avoid these obstacles. “I find streets safer because there is only [the] risk of [a] car accident and I can walk faster,” she said.[146] Bahram, a 36-year-old blind man living in Karaj (Iran’s fourth largest city), said that in 2016, his foot became stuck in a hole in the sidewalk, and he fell. “I had surgery, but I still can’t fully bend my leg,” he said.[147]

Tactile paving that can help guide people with visual disabilities on sidewalks and across intersections are installed in some streets. But blind persons reported  that the lack of quality, improper installation, and non-observance of accessibility standards often mean that these lines are useless.[148] For example, Mahmood, a blind man living in a southern Iranian city, explained that officials used yellow material on sidewalks, apparently to guide people with low-vision, but the material is not sufficiently raised to be recognized by his white cane.[149] Many blind persons said that because of improper installation, tactile lines often guide them into poles, trees, or telephone booths.  Not knowing what tactile lines are for, street vendors may place their carts on them.[150]

In a 2016 media interview, the head of the Secretariat of the National Headquarters to Follow-up on Accessibility blamed subcontractors hired by municipalities for improper installation of tactile lines: “This is due to the lack of training for those subcontractors and has caused many injuries and issues for blind persons.”[151]

Obstacles for People Who Are Deaf or Hard of Hearing

Deaf and hard of hearing persons reported that they face different barriers accessing metros and buses. Although public transportation is typically slower or sometimes not available at all, many said they use public transportation rather than taxis because of difficulties communicating with drivers.[152] Shahla, a deaf woman who lives in Tehran, said, “Sometimes the signs in the metro or bus stations are not visible, or I can’t read them quickly due to the crowd. So I miss the right station or vehicle. When I ask people for help, they make fun of me because I use sign language.[153]

Deaf and hard of hearing persons also face challenges driving. There are no standard signs to inform others that a deaf or hard of hearing person is driving a car. The SWO gives specialized car plates with the sign of a wheelchair to persons with disabilities. Sohrab, a 30-year-old deaf man, explained why this is not sufficient for people who are deaf: “What we need is a specific sign so that people can know that beeping for us does not work. Instead, they should flash their lights or use other visual ways to communicate with us.”[154]

In March 2016, a group of deaf and hard of hearing people demonstrated in front of the SWO’s main office in Tehran. Following these protests, SWO rehabilitation director Hossein Nahvinezhad signed an agreement with representatives of organizations for people who are deaf pledging to ensure the provision of car plates indicating a driver who is deaf (see the annex included in the online version of this report.

Barriers in Accessing Public Buildings and Services

I have missed many opportunities in my life due to inaccessible buildings. I couldn’t take care of my education and student affairs [issues] at the university because offices were located upstairs and there was no accessible elevator. I couldn’t go to the English language and music courses I dreamed of. Once my brother had to carry my wheelchair up to the third floor to have my eyes examined for my driver’s license. The worst part was that only once we reached the third floor we learned that the ophthalmologist was not even working that day!”
—Homa, 23-year-old woman with physical disabilities, Tehran, November 20, 2016

Persons with physical disabilities told Human Rights Watch and the Center for Human Rights in Iran that finding an accessible public building is an exception.[155] Persons with disabilities interviewed said that they find the entrances of most public buildings inaccessible, especially those who use wheelchairs due to stairs with no alternative ramps or elevators. Even when an elevator is available, interviewees said that many elevators were too small to fit most wheelchairs, or there were stairs before reaching the elevator. [156]

Ehsan, a man with a physical disability who lives in a small town in western Iran, said that while local hospitals and clinics have elevators, no other public building in his town is accessible. He said, “Even the municipality office which supports making public spaces accessible has more than 30 stairs.”[157] Hamed, a 27-year-old man who uses a wheelchair, said that when he had to go to court in the town where he lives, two people had to carry him in his wheelchair up 40 stairs.[158]

Even SWO offices are typically inaccessible, despite the fact that people with disabilities must visit them in order to receive various services. Mansour, an accessibility consultant and evaluator, said that the SWO office in the city where he worked is less accessible than many other government offices he visited. “The elevator was small and couldn’t fit a wheelchair. The safety handle was also very high and unreachable. The elevator’s door shut so fast that it could hurt you if you didn’t get in quickly,” he said.[159]

Persons with physical disabilities who were interviewed expressed specific concerns about accessing banks and ATM machines. Inaccessibility to these financial resources hinders persons with disabilities from conducting their financial matters in a private and secure way. Most of them must ask a family member or friend to do their banking for them, which can undermine their privacy and independence.[160] When a trusted person is not available, persons with disabilities may feel their only choice is to ask strangers for assistance despite the risk of theft.[161]

Yashar, a 39-year-old man with physical disabilities, said that he has identified a few banks without stairs, but has not managed to find a single ATM machine that he can use from his wheelchair. He often resorts to asking strangers to withdraw money from his account for him.[162]

Fatemeh, a woman with a physical disability, explained the difficulties she experiences accessing the bank. She said:

When I need to use an ATM machine, I stand in a corner and look at people’s faces to guess who could be a trustworthy and supportive person to help me. Then, I give them my card and tell them my pin and ask them to withdraw money for me or do any other banking I need. It is a stressful and uncomfortable situation.[163]

Blind persons or persons with low vision reported inaccessible elevators in many public buildings. In some cases, elevator call and floor buttons are not accessible because they do not have braille or voice controls.[164] One blind person said that in a few public buildings he visited, Braille signs have been installed improperly, such that the button indicated in braille that it is for the first floor, when actually the button is for the second floor.[165] Blind persons and people with low vision also said that in many public buildings, elevators do not announce the floor number, so they must ask others to tell them which floor is coming up. If there is no one else in the elevator, they rely on trial and error to find the right floor.[166]

Banafsheh, a blind woman who works for a public company in Tehran, described how one morning when she tried to use the elevator to go to her office on the sixth floor, she found that an inaccessible electronic touch key pad had been installed for the elevator. She said, “I was really disappointed that they had changed it without considering my needs. From that day onward, I needed to wait for a colleague to help me select the right floor. Quite often, I preferred to walk all the way up to the sixth floor instead.”[167]

Government Response on Accessibility

In recent years, the government has taken some concrete measures to improve accessibility, including by adopting mandatory accessibility standards for urban architecture.[168] However, the standards relate only to accessibility for people with “movement restrictions,” ignoring accessibility requirements for people with other types of disabilities. In addition, the standards are not available in an accessible and readable format for people who are not architects or engineers. Our research could not determine if and how the principles of Universal Design have been considered in creating these standards.[169]

Since 2015, the national and provincial Headquarters to Coordinate and Follow-up on Accessibility have carried out policy-making, planning, monitoring, and creation of a national database on accessibility at the national and provincial levels.[170] In 2016, the Headquarters on Accessibility collected information on accessibility in public agencies by investigating roughly 1,200 public agencies in 31 provinces for compliance with 13 criteria on building accessibility.[171]

The results found that public agencies in Yazd province were the most accessible, meeting 59 percent of the accessibility criteria, while Tehran province’s public buildings were the least accessible at 24 percent. The National Gas Corporation and the Foundation of Martyrs and Veterans Affairs were the most accessible agencies, while the Iran Medical Council and Iran Broadcasting Organization were the least accessible.[172]

In recent years, municipalities around the country have appointed advisors on citizens with disabilities or urban accessibility, some of whom are persons with disabilities. For example, in Isfahan, persons with disabilities and their organizations have participated in accessibility evaluations of 80 government bodies.[173] In Shiraz, each of the ten municipal districts have appointed one person with a disability as accessibility consultants.[174]

Pooya, a blind man who advocates for disability rights, said that based on his observations, the appointment of persons with disabilities as advisors in many cities may be largely symbolic. “I do value this even as a symbolic action. But, […] the level of real impact depends on the will and interest of officials to seek and listen to the opinions of people with disabilities.”[175] The UN CRPD Committee has also expressed concerns regarding the lack of information about how “representative organizations of persons with disabilities are consulted in the development of measures to accomplish accessibility.”[176]

However, our research indicates that persons with disabilities are not always meaningfully included in the accessibility planning, implementation, or monitoring processes. Javad, a disability rights advocate with a physical disability said, “If they included us in what they intend to do for out benefit, then we could see a much better outcome in making sidewalks, roads, and other public facilities accessible. I was really disappointed when I realized that such meagre resources available for making cities accessible was wasted simply because they don’t ask the eventual users to participate.”[177] Ziba, a woman with a physical disability, said that she found a park advertised as a “disabled persons park” mostly inaccessible. “I only could use one of the entrances with my wheelchair. The benches where not designed to be accessible and the ramps were often [too] steep. I was so disappointed to find that this was mostly for show.[178]

The National Headquarters on Accessibility recently introduced a text message system, known as “Mabar,” through which people can report accessibility problems with public roads and public buildings. According to the authorities, upon verifying the complaint, the Headquarters’ secretariat will follow-up with relevant bodies to resolve the issue.[179] In our research we could not find publicly-available information on the mechanism, including the number of complaints and any outcomes.

Our research did not identify any legal case resulting in sanctions for non-compliance with accessibility standards.[180] The law envisages denial of construction permits or completion certificates to public roads and buildings which fail to fulfill accessibility standards. However, the government of Iran has not made public any information about implementation of this regulation.

V. Lack of Accessibility and Discrimination in Healthcare

For many people with disabilities we interviewed in Iran, lack of inaccessible facilities, discriminatory attitudes, and a lack of awareness about disability among doctors and medical staff, impede access to medical care. Barriers to accessibility described in detail above include: in accessing personal care and assistive devices; lack of insurance coverage under the national insurance scheme; a lack of financial means including inadequate government support; inaccessible transportation and physical infrastructure, such as in health care facilities impeding access to medical services for people with disabilities on an equal basis with other people in Iran.[181] 

We also documented cases in which doctors and other healthcare professionals did not seek or obtain the informed consent of their patients with disabilities and did not provide them with comprehensive information about treatment or potential side-effects in an understandable format, if at all.

The CRPD requires that persons with disabilities enjoy the highest attainable standard of health with the same range, quality, and standard of free or affordable health care and programs as provided to other persons.[182]

Lack of Availability, Accessibility, and Reasonable Accommodations

Quality and specialized health care services are not provided in some provinces, particularly in remote and rural areas.[183] People living in these locations often must travel to major cities to access more advanced health care services or visit a specialist. Vajiheh, a 41-year-old woman with a physical disability who lives with her son, explained, “If I have to go, my son needs to take time off from his job, rent a private taxi, carry me and my wheelchair, and take me to the clinic or hospital. It’s all a huge burden, which I try my best not to impose on him.”[184] Ehsan, 37, who has a spinal cord injury, said that in order to visit a specialist he needs to travel to another province, which would take at least four hours.[185] Reihaneh, whose daughter Yasamin has intellectual disabilities, also said that she had to travel three hours to Tehran once a week for several years for her daughter to access quality occupational therapy and physiotherapy.[186]

Upon reaching a hospital or clinic, persons with disabilities often cannot access them. Saeed, a 28-year-old man who uses crutches, described one experience that kept him from receiving treatment for his eyes:

It happens a lot that I need to go up somewhere without an elevator. I sit on the stairs and pull my body upstairs by the railings. This is not something new. But one day I had to reach the doctor’s office on [the] third floor, and the stairs were uneven and narrow, and the stair railings broken and unsafe. I feared I would fall and get injured. So, I decided just to live with my eye condition and not go up such stairs.”^[187]

Vajiheh, 41, has been using a wheelchair for the past 10 years. She said that many essential medical services in her town do not have ramps or elevators. “It’s not just the clinics, I also can’t purchase anything from the drug store because all of them are upstairs,” she said. “The same is true about other health care facilities such as labs or radiology facilities.”[188] Ziba, a woman who uses a wheelchair, said that she has been hospitalized in two public hospitals where bathrooms in them were inaccessible. She could not enter the bathroom with her wheelchair and there was no grab bar to facilitate her using the bathroom independently.[189]

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 there do not provide them with accommodations. People interviewed described how they faced barriers in finding their way, filling out different forms, or purchasing medicines or other medical products.[190]  Some people who are blind or have low vision also said that neither the prescribing physician nor drug store personnel would assist them in understanding how they should identify different medications and how to use them.[191]

Deaf and hard of hearing persons interviewed said that they cannot use health care services independently due to the lack of sign language interpreters. Shahla, a deaf woman living in Tehran said, “There is no sign language interpreter provided in the hospitals or clinics. I have to ask my mother to accompany me if I become sick. If she is not available, then I don’t go. Because if I go alone, they won’t understand what my medical need is and could give me the wrong medication.”[192] Sohrab, who is deaf and has been an advocate for deaf persons’ rights for several years, said that deaf persons “do their best to avoid going to hospitals or other medical facilities because people hardly understand them, which is really annoying.”[193]

Discriminatory Attitudes among Health Care Professionals

Many people with disabilities Human Rights Watch and the Center for Human Rights in Iran interviewed said that they faced discrimination by health care personnel, including denial of care. There is no publicly available information about the training doctors and other medical personnel receive regarding the rights of persons with disabilities.

Vajiheh, a woman with physical disabilities, said, “Some of those working in hospitals or clinics behave in ways that make me think this is the first time they’ve ever seen someone using a wheelchair in their lives.”[194] Davood, a blind man living in Tehran, described a difficult experience at a hospital. He said, “The environment is so inaccessible, and they require you to go to so many different offices. But there is no one officially responsible to provide assistance, and when they found that I needed help, they finally asked one of the staff to help me. I could hear their pitiful words.… I really felt humiliated.[195]

Persons with intellectual and psychosocial disabilities and their parents told our researcher that they occasionally faced inappropriate comments or negligence from health care personnel. Azam, the mother of a 12-year-old girl with Down Syndrome, said that once a physician refused to examine her daughter. “When he saw my daughter had Down Syndrome, he blamed me for giving birth at an old age and causing her disability. He then said that if my daughter has a cold, I could give her medicine at home and shouldn’t bring her to the clinic.”[196]

Jafar, a 52-year-old man with a psychosocial disability said, “When I tell the physicians or drugstore staff that I have a mental disorder, their behavior changes and becomes cold and negative. They are scared of us because they are not aware. Even the psychiatrist’s assistants or office secretaries don’t know how to interact with mental health patients.”[197]

We also documented barriers in accessing dental medical care for some persons with disabilities. For example, Arash, a 24-year-old man with muscular dystrophy said, “Muscular dystrophy causes extreme limitations in the muscles. But the dentists I visited did not know about this condition and tried to open my mouth by force. It seems they have not been educated on how to provide dental care to people with different types of disabilities.”[198]

Some parents of children with intellectual or psychosocial disabilities also said they face difficulties finding dental professionals who have the skills for and are patient enough to provide services to their children.[199]

Barriers to Accessing Sexual and Reproductive Healthcare and Information

Access to sexual and reproductive health care and information is difficult for most of the population in Iran. Traditional and religious beliefs about sexuality, lack of any sexual health education in official school curricula, and the absence of public information programs have contributed to low levels of awareness.

Due to additional barriers, persons with disabilities experience greater 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, a lack of professional assistance to facilitate doctors’ visits, and a lack of information about the importance of this care.

For example, Vajiheh, a woman with a physical disability who uses a wheelchair said, “Going out is so difficult and expensive for me that I do my best to limit it to the most urgent cases. Because I have a spinal cord injury, I don’t feel anything in my body below my chest. So, I have not noticed any problems in my sexual organs. I don’t give priority to this issue. I really don’t remember when I last visited a gynecologist.”[200]

Reliance on family members, due to the lack of availability of personal assistants or sign language interpretation, interferes with women’s comfort in seeking gynecological care. Fatemeh, a 32-year-old woman with a physical disability using a wheelchair, said that it had been two years since she was able to visit a gynecologist despite her feeling that she needed to do so. She said, “The only close person I have is my brother. But I really feel embarrassed to ask him to prepare me for a gynecology checkup and lift me on the gynecology exam table.”[201] Shahla, a 24-year-old deaf woman said that she is not able to have a gynecological examination, unless her mother accompanies and interprets for her. “But this is very embarrassing to share everything when my mom is there. So it’s better not to go,” she said.[202]

Inaccessible buildings and facilities may also prevent women who use wheelchairs from accessing diagnostic services. For example, mammography machines are overwhelmingly inaccessible, with only one accessible machine in Tehran with a months-long waiting list.^[203]

Two mothers of girls with intellectual or psychosocial disabilities said that when they spoke with health care professionals about how to teach their daughters to manage their menstruation, the medical workers advised them to artificially delay their girls’ puberty through medication.[204] Reihaneh, mother of Yasamin, a 14-year-old girl with intellectual disabilities, said, “When Yasamin was about to start menstruating, our family doctor suggested that we could delay it by injecting some drugs in her. But when I consulted with one of my friends who was a gynecologist, she said it would have lots of side effects. So we decided not to do it.”[205]

Lack of Informed Consent and Adequate Information about Medical Treatment

My son has undergone electroshock therapy for 14 years now. Each time they tell me that he needs it and that, “You should sign this paper to allow it,” and I just sign the paper. But I still don’t know what shock therapy is and how it works. I think my consent for my son would be genuine only if I knew what exactly I’m permitting to happen.
—Akbar, father of Hesam, a 34-year-old man with a psychosocial disability

We documented many cases in which doctors and other healthcare professionals did not seek or obtain the informed consent of their patients with disabilities and did not provide them with comprehensive information about the treatment or potential side-effects in a fully understandable format, or often at all. In many cases, parents or other family members consented for their adult children or relatives to be treated, and such consent is typically obtained as part of the paperwork required for the treatment to start, also often without full information about the treatment. 

For adults with disabilities, medicine and medical 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 persons with disabilities as to others, including on the basis of free and informed consent.[206] The CRPD Committee has held that treatment by health professionals without consent is a violation of the right to equal recognition before the law and an infringement of the right to personal integrity; freedom from torture and inhuman and degrading treatment; and freedom from violent exploitation and abuse.[207] The UN special rapporteur on the right to health has also stated that informed consent “is a core element of the right to health both as a freedom and an integral safeguard to its enjoyment.”[208] The special rapporteur also noted that where grounds of “medical necessity” and “dangerousness” of the person are used as justification for non-consensual treatment; their application is open to broad interpretation and, consequently, raises questions of arbitrariness.[209]

Inappropriate Use of Electroconvulsive Therapy [ECT]

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.[210] 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.[211] ECT is used as a last resort in cases where people are unresponsive to medication or in cases where an immediate or swift recovery is sought.

Hoda, a social worker specializing in therapy with persons with psychosocial disabilities, said, “All mental patients and their families know that hospitalization in a psychiatric hospital very likely, if not always, equals shock-therapy. At the first noise or signs of disobedience, they send the patient to be shocked.”[212] Reza, a psychiatrist, who has worked for more than 20 years in Tehran and another city in central Iran, stated, “If the person has the ability to judge and understand, we tell them what we are going to do. Otherwise, we speak with the family. But in urgent cases where the mental patient is a threat to themselves or to the society, then we practice it without getting the consent form and ask for the consent when the emergency is over,” he said.[213]

Similarly, Farhad, a psychotherapist who has been practicing in Tehran for nearly 30 years said, “But even if the psychiatrists explain the process and effects, this does not mean that they ask permission from the patients and if the patient refuses, they are not going to practice it. They tell the patient’s family that ECT is the only solution and they must accept it if they want their patient to feel better. So families eventually agree.”[214]

All persons with psychosocial disabilities interviewed said that each time they have been hospitalized, they received between 6 to 12 ECT sessions.[215] Persons with psychosocial disabilities interviewed said that they learned about ECT by experiencing it several times. “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 afterward,” said Jafar, a man with psychosocial disabilities.[216] Another man with a psychosocial disability said, “The night before they take me to receive shocks, they gave me light food and told me that I was going to be shocked the next day. That’s how I knew it was going to happen.”[217]

Lack of Adequate Information about Psychosocial Disabilities

People whom we interviewed said mental health professionals did not always provide adequate information to patients with psychosocial disabilities and their family members about their conditions or treatment options. Soheila, who has worked with persons with psychosocial disabilities for many years in different healthcare positions said,

For example, some psychiatrists do not explain to family members that when a person with schizophrenia says that they see images or hear voices, they really do, and that the family should not try to argue with them. Failure to provide such simple explanations makes the situation very difficult … for the patient and the family. We had a case in which the family was [only] informed after 40 years of living with someone with schizophrenia about the condition and its nature.[218]

Mahdi, a man with a psychosocial disability, said, “Once, I got a job as a secretary and stopped taking my medication because I didn’t want to look languid and sleepy. But after a couple of months I felt terrible and had to go to the hospital. I didn’t know that I should not stop taking my drugs whenever I wanted. My doctor never told me.”[219]

Persons with psychosocial disabilities interviewed also stated that they were not aware of their right to know about the treatment they are receiving and available alternatives. “I regret to say that persons with mental health conditions are so unaware of their rights and have so deeply absorbed the message that they are a burden to society that they rarely raise any complaint about not being included in their treatment process. So, we hardly feel any problem about the lack of free consent,” said Soheila.[220]

Jafar, a 52-year-old man with a psychosocial disability said, “When I go to the [psychiatric] hospital, I let them restrain me to my bed to prove that I want to cooperate and to ensure that I’m not injuring anyone.”[221]

National and International Legal Framework

National Law

The constitution of Iran does not include any explicit reference to persons with disabilities, although it states that “All citizens of the country, both men and women, equally enjoy the protection of the law and enjoy all human, political, economic, social, and cultural rights, in conformity with Islamic criteria.” [222] The constitution also guarantees social pensions to every person. This covers retirement, unemployment, old age, loss of working capability, accidents, and events giving rise to the need for health services and medical care and treatment, through insurance or other means. The government should provide these services and support for every individual in the country. 

In May 2004, the adoption of the Comprehensive Law to Protect Disabled Persons was a turning point for the disability movement in Iran. This legislation guarantees fundamental rights and privileges for persons with disabilities in areas such as accessibility, education, rehabilitation, and employment. However, the legislation contains no disability-based discrimination clause, and does not refer to basic rights such as legal capacity or freedom from violence and abuse. The law requires “all ministries, government organizations, and public and revolutionary institutions to design, produce and construct public buildings and facilities, roads and service equipment in a way that disabled persons can use them as other people do.”[223] Regulations developed after the law require all government bodies to ensure that thirty percent of their buildings and facilities are made accessible annually.[224] Municipalities must also ensure that all new buildings, roads and facilities fulfill accessibility requirements.[225]

The 2016 Charter on Citizenry Rights, which largely reiterates rights and protections that exist in Iran’s constitution and domestic laws, includes references to persons with disabilities, including that citizens with disabilities have the right to enjoy treatment and rehabilitative facilities to achieve independent living and participation in different aspects of life. It also recognizes the rights of war veterans and their families to enjoy special measures. The charter also states: “Any inappropriate discrimination against citizens in accessing public services such as health care services, employment and education opportunities is prohibited. The state must refrain from conducting any decision or measure that would lead to social class distancing and inappropriate discrimination and deprivation from citizenry rights.” [226]

In March 2017, the National Administrative Council, which includes the president, several government ministers, and other senior officials involved in overseeing Iran’s national budget, adopted the “Ratification on the Implementation of Citizenry Rights Charter in the Administrative System,” which states that “any differentiated support on the basis of disability, age, or any other justifiable basis would not be considered discrimination.^[227] This regulation also requires all government bodies to swiftly facilitate access of persons with disabilities to service provision and obligates all government bodies to “install in their respective buildings signs and figures easily readable and understandable for persons with disabilities.” Public bodies should also adequately train their staff on respect for people with disabilities and must improve their information and communication sources and technologies to allow independent use by persons with disabilities.”^[228] 

The Law on Criminal Procedure provides that NGOs, including those whose mandate is to protect the rights of “patients and mentally or physically disabled,” can file complaints on behalf of them regarding the crimes committed in their jurisdiction and participate in all stages of the hearing to provide evidence.[229]

International Obligations

Iran is a party to several major international human rights conventions, including the International Covenant on Civil and Political Rights (ICCPR),[230] the International Covenant on Economic, Social, and Cultural Rights (ICESCR),[231] and the Convention on the Rights of the Child (CRC).[232] In 2009, Iran acceded to the Convention on the Rights of Persons with Disabilities (CRPD), but it has not signed the treaty’s Optional Protocol.[233] Under these treaties, Iran has obligations to ensure the rights of all persons with disabilities, including children. According to the Civil Code, treaties ratified in accordance with the constitution are considered to be domestic law.[234] However, Iranian judges rarely invoke international treaties in their judgments.[235]

Nondiscrimination

The CRPD defines discrimination on the basis of disability as “any distinction, exclusion, or restriction on the basis of disability which has the purpose or effect of impairing or nullifying the recognition, enjoyment, or exercise on an equal basis with others, of all human rights and fundamental freedoms in the political, economic, social, cultural, civil or any other field.” Discrimination includes “denial of reasonable accommodation” for the needs of persons with disabilities and involves any distinction or exclusion, including, for example, a transport operator failing to stop to let a person using a wheelchair onto a bus.[236]The CRPD also specifically requires state parties to take appropriate measures to eliminate discrimination against people with disabilities with in regard to marriage, parenthood, and family. This includes protecting the right of persons with disabilities to found a family.[237]

Accessibility

The CRPD requires that states take measures to ensure persons with disabilities have access, on an equal basis with others, to the physical environment, to transportation, to information and communication, including information and communication technologies and systems, and to other facilities and services open or provided to the public both in urban and in rural areas. The physical environment includes buildings, roads, schools, housing, medical facilities, workplaces, and “other indoor and outdoor facilities.”[238]

Living Independently and Being Included in the Community

The CRPD requires states to enable persons with disabilities to live independently and to participate and be included fully in their communities, including by guaranteeing their right to choose their places of residence and access services and facilities available to the general population on an equal basis with others.[239] The right to live independently and be included in the community should not depend on the level of support a person with a disability needs.[240] In order to realize this right, States should ensure: “…[a] range of in-home, residential, and other community support services, including personal assistance…”[241]

According to the UN Committee on the Rights of People with Disabilities, support services must be considered a right rather than a form of medical, social, or charity care. Persons with disabilities have the right to choose services and service providers according to their individual requirements and personal preferences, and individualized support should be flexible enough to adapt to the requirements of the users. Support services must be available within a safe physical and geographical reach to all persons with disabilities living in urban or rural areas. They have to be affordable, taking into account persons living on low incomes. They also need to be acceptable, which means that they must respect standard levels of quality and be gender, age, and culturally sensitive. While implementing legislation, policies, and programs, states parties must closely consult and actively involve a diverse range of persons with disabilities.[242]

The Rights to Health and Rehabilitation

The CRPD makes certain guarantees to people with disabilities as part of their right to the highest attainable standard of health, including the right to a range of healthcare services of adequate quality as close as possible to their communities and the right to means of rehabilitation with the purpose of enabling them to participate fully in their communities. People with disabilities are entitled to health services needed specifically because of their disabilities, including early identification and intervention as appropriate.[243]

The CRPD also guarantees people with disabilities access to rehabilitation services based on a “multidisciplinary assessment” of peoples’ needs and geared toward their participation in their communities. The government is obligated to promote not only the availability of assistive devices but also “knowledge and use of assistive devices and technologies, designed for persons with disabilities” and to “promote the development of initial and continuing training for professionals and staff working in habilitation and rehabilitation services.”[244]

Awareness-Raising

The CRPD requires states parties to adopt immediate and effective measures to “raise awareness throughout society … to foster respect for the rights and dignity of persons with disabilities; to combat stereotypes, prejudices and harmful practices relating to persons with disabilities … in all areas of life; and to promote awareness of the capabilities and contributions of persons with disabilities.” Measures to this end include but are not limited to: initiating public awareness campaigns that “promote positive perceptions and greater social awareness towards persons with disabilities” and promoting “recognition of the skills, merits, and abilities of persons with disabilities.”[245]

Recommendations

While some of these recommendations should be implemented by individual authorities or government agencies, overwhelmingly these recommendations can only be implemented through meaningful inter-agency coordination at the national level, as well as by provincial offices and municipalities. The government of Iran should establish an inter-agency working group to address the short-term and long-term policy actions and other changes necessary to ensure the rights of people with disabilities in Iran.

To the government of Iran:

• Implement a comprehensive review of legislation and policies including a legal definition of disability, to ensure that they are in line with the requirements of the Convention on the Rights of Persons with Disabilities;
• Remove all derogatory language from legislation and policies;
• Adopt a legal provision based on CRPD requirements defining and prohibiting disability-based discrimination including denial of reasonable accommodation;
• Implement public awareness campaigns about people with disabilities, emphasizing their equality, inherent dignity, and human rights.
• Ensure that public officials refrain from any language that is discriminatory or derogatory towards people with disabilities as an essential part of combatting discrimination and stigma;
• Ensure that all persons with disabilities have the opportunity and accessible information to register as a person with a disability with relevant state agencies;
• Ensure that SWO staff, particularly social workers who are in daily contact with people with disabilities, receive adequate and regular training on rights and needs of people with different disabilities, based on the principles underlying the CRPD;
• Establish effective and independent monitoring systems to ensure that SWO staff respect the rights, dignity, and diversity of people with disabilities;
• Establish accessible and confidential complaint mechanisms to ensure that any alleged abusive or negligent treatment by SWO staff is properly investigated and appropriate remedies are provided in the event of a violation. Information about how to use these mechanisms should be distributed in accessible formats, including sign language, Braille, audio, or large fonts, and easy-to-read formats to people with disabilities and their support persons upon registration with SWO;
• Ensure that all individuals or companies offering home-care services to people with disabilities are licensed and that home-care providers fulfill background checks and professional training. Ensure that people with disabilities who use home care services have access to effective complaint mechanisms in case of any abusive or negligent treatment;
• Ensure that any financial support including “nursing allowance” or “disability pension” is allocated based on a transparent, confidential and needs-based assessment.
• The SWO should prepare an individual support plan for each person with a disability that includes the types of assistive equipment and other services according the individual’s needs; to maximum extent feasible using available resources, support people in obtaining assistive devices and services determined in their individual support plans;
• Ensure that the procurement of assistive equipment aligns with the actual needs determined by the individual support plans;
• Ensure that disability prevention programs are funded and implemented separately from policies designed to ensure the rights of persons with disabilities. The State Welfare Organization, as the main implementing agency of the CRPD should not have responsibility for disability prevention. Any disability prevention policies should be designed and implemented with full respect for the autonomy and right to private and family life of persons with disabilities;
• Withdraw any legislation or policy leading to any obligation for people to undergo genetic testing or consultation, including as a requirement for registration of a marriage;
• Develop and publish a time-bound detailed plan to ensure, using maximum available resources, that public transportation would become equally accessible for persons with disabilities. At the mid-term/short-term level, dedicate specific services to facilitate access to transportation for all persons with disabilities in order to ensure their social inclusion and exercise of other basic rights;
• Provide adequate training to public transportation staff, including bus and social taxi drivers, to support persons with disabilities in their use of public transportation while respecting their dignity and autonomy;
• Develop a time-bound detailed, plan, using maximum available resources, to ensure that people with disabilities in rural and remote areas can access transportation on an equal basis with others including by provision of reasonable accommodation;
• Develop and publish uniform standards on accessibility in line with Universal Design Principles, and ensure that these standards are accessible to all persons with disabilities and other stakeholders; coordinate and consult with people with disabilities and disabled persons’ organizations on distribution of the standards;
• Conduct regular comprehensive studies on accessibility of all public buildings and publish the findings, including in the media;
• Introduce and enforce meaningful penalties for non-observance of accessibility requirements and denial of reasonable accommodation to persons with disabilities;
• Make accessibility standards mandatory for any procurement of goods, services and technologies which will be used to serve the public;
• Ensure that medical care for persons with disabilities is of the same quality and equally accessible for persons with disabilities on an equal basis with others. Medicines and treatment should only be given on the basis of free and informed consent.
• Ensure that the National Health Transformation Plan extends coverage under the national health insurance scheme coverage to disability-related healthcare and rehabilitation services.
• Ensure that health care professionals are adequately trained on how to inform persons with disabilities about available medical choices, any proposed treatment, including potential side-effects, and support them in making decisions if so desired by the person;
• Ensure that all persons with disabilities, particularly women and girls with disabilities, have access to sexual and reproductive services, information, and choice;
• In consultation with deaf and hard of hearing persons and organizations representing them, develop and publish a detailed time-bound plan to realize, using maximum available resources, access to professional sign language interpretation for deaf and hard of hearing persons who seek to use public services including SWO and other organizations serving people with disabilities, health care facilities, and the justice system.

To Iran’s international partners, including the EU and its member states:

• Include human rights, including the rights of people with disabilities, in all bilateral and multilateral discussions with Iran.
• Ensure that funding for civil society and economic and social development include benchmarks and reporting regarding progress in ensuring the rights of people with disabilities.

Acknowledgments

This report was researched and written by a Persian-speaking researcher who wishes to remain anonymous for security reasons. The researcher worked jointly with the Disability Rights Division of Human Rights Watch and the Center for Human Rights in Iran.

Jane Buchanan, deputy director in the Disability Rights Division edited the report. Shantha Rau Barriga, director in the Disability Rights Division, Emina Ćerimović, researcher in the Disability Rights Division, and Danielle Haas, senior editor in the Program Office of Human Rights Watch edited initial versions of this report. Michael Page, deputy director of the Middle East and North Africa Division, Tara Sepehrifar, Iran researcher, Diederik Lohman, director of the Health and Human Rights Division, and Bill Van Esveld, senior researcher in Children Rights Division, reviewed the report. Clive Baldwin, senior legal advisor, provided legal review. Tom Porteous, deputy program director, provided program review.

Hadi Ghaemi, Executive Director, Omid Memarian, Deputy Director, and Karen Kramer, Director of Publications, reviewed the report for the Center for Human Rights in Iran. Azin Mohajerin, disability rights researcher, at the Center for Human Rights in Iran assisted with finding cover photos.

Stephanie Collins, associate in the Disability Rights Division at Human Rights Watch, provided editorial and production assistance. The report was prepared for publication by Fitzroy Hopkins, production manager.

We are grateful to the individuals who shared their personal stories, as well as the service providers and disability rights advocates who agreed to be interviewed. Many of those interviewed also dedicated their time and passion to connect us to other interviewees. They did so knowing that we are not able to acknowledge them each individually, due to security considerations. We are additionally thankful for their efforts, given the challenges of doing the interviews remotely due to our lack of access to Iran.