Seven-year-old Somaiya sat in her wheelchair in the school veranda, sadly looking on at her classmates playing games. Some of her classmates at the Girls Primary School Ghaligay in Tehsil Barikot, Swat, were running a three-legged race, some were skipping rope. Her best friend, Urooj, sensed her turmoil and told the teacher that Somaiya is always unhappy during outdoor games class because she cannot play with the other children. Sometimes Somaiya even cries. Observing her for a few minutes, the teacher, Naila, pushed Somaiya’s wheelchair to the playground and gave her a whistle. “You are the referee,” she told her.

Something changed in the little girl on the wheelchair that day. “We saw a new Somaiya after involving her in activities,” says Naila. “She enjoys giving directions to players. She is excited and energetic now.

“Participation in social life is the best tool for developing the personalities of children with disabilities,” Naila tells Eos.

The overarching issue of inaccessibility is what preents disabled persons from integrating in society in general, points out Abdul Aziz, a handsome young man from Buner. A polio attack in his childhood left Aziz dependent on a pair of crutches for life.

It is time for society to ensure increased social and political participation among persons with disabilities, so that it does and not lose out on their potential

“This year, the tagline for International Day for Persons with Disability [marked on December 3] says that the future is accessible,” he says. “We also wish for a future where no barriers exist for people with disabilities. Transport systems, schools, hospitals, banks, parks and government offices should be accessible without having to use stairs so that people with disabilities are not excluded from social activities,” says Aziz who works as a laboratory assistant in a government-run secondary school in Buner.

Making buildings accessible for persons with disability would not entail huge project costs. “There can only be about one percent increase in construction costs for new buildings while old structures need minimum adaptation to make them accessible,” says Zahid Khan, a senior civil engineer in a local development organisation. “Accessibility costs increase only in constructing huge multi-storey buildings,” he says.

A district Social Welfare Officer in Swat, Nusrat Iqbal, tells Eos that there are 11 vocational training centres, one institute for the visually impaired, and one special institute for hearing-impaired children, a Darul Aman, a Darul Kafala /Shelter Home and a Rehabilitation Centre for Drug Addicts in the district. But, she says, that most of the institutes are housed in rented buildings and the government cannot modify them to make them easily accessible to physically-challenged people. According to the Social Welfare Department, the other major factor is lack of funds. “All these buildings are on rent except one vocational training centre, in Matta tehsil, which is being altered for accessibility,” she tells Eos.

Data On Disabled Persons

As per the data shared by the district Social Welfare Office, the total number of people with disabilities registered with the department so far is 17,492, including men, women and children. The District Population Officer, Asim Raza, claims the total population of Swat district stands at 2,309,570 which means that 0.75 percent of people are persons with disabilities are registered across the district.

“We register only those persons with disabilities who come to our office. We don’t have any mechanism and resources to get them registered ourselves,” Iqbal tells Eos. According to the relevant stakeholders involved in the disability movement in Pakistan, the crucial issue is the inability of the government to collect accurate data on disability.

“There is great inconsistency in the official data of persons with disabilities,” says Muhammad Atif Sheikh, Executive Director of the Special Talent Exchange Programme (Step), Islamabad. “In the 1998 census, the ratio of persons with disabilities was 2.49 percent while the census of 2017 has decreased the ratio of persons with disabilities to 0.48 percent, which means they are only one million — no one can believe that.

“According to the UN census on disability, persons with disabilities constitute 10 percent of the world population while the 2002 World Report on Disability, reported it as 12 to 15 percent. The Pakistan Poverty Alleviation Fund (PPAF) surveyed 23 districts, and showed seven to 10 percent prevalence of disability in Pakistan,” he adds.

A Social Stigma

“Many people see disability as the outcome of sins committed by your parents,” says Aziz, discussing the stigma attached to having a disability in our society. “They don’t call people with disabilities by their respectful names, instead they are called by the type of disability they have, such as being blind, deaf or dumb, or lame. This destroys a person’s self-respect.”

Minhas Gul is the perfect foil to society’s unmindfulness towards disabled persons. Gul, a polio survivor, hails from Abbottabad but she works in Swat as a Hygiene Promotion Officer. She has been successful in achieving many of her life goals because of her family’s unflinching support.

Gul recalls how she was afflicted with polio at the age of four. Her mother was not educated, but she would take her to a distant hospital regularly for physiotherapy. “My family never treated me as a physically-challenged person but [treated me] the same as they treat my siblings,” she says. “I used to play outside with my cousins in my childhood.”

Throughout her education, from school to university until she completed her masters in chemistry, Gul’s teachers, parents and everyone around her supported her every step.

“Girls with disabilities have no access to faraway schools in rural areas,” Gul points out. “If they are admitted to schools their drop-out ratio is high because their families lack the financial resources for transportation costs or to arrange a helper for them. In rural areas, women with disabilities have no skill development opportunities for their survival and to become financially independent,” says Gul.

“Most of the poorest people struggle with disabilities,” says Bahadur Ali, 45, who is the father of two children with disabilities. “My two sons, aged four and nine, suffer from cerebral palsy [a group of disorders affecting movement, posture or muscle tone] and I have already lost two daughters, aged three and 14, to the same disability,” says the resident of Kharerai village in Swat. “My kids were born normal but a week or two after birth, they suffered from severe fever and fits which doctors diagnosed as cerebral palsy.”

Ali points out a correlation between poverty and disability. “Disability adds to financial constraints and, in the absence of proper education and job opportunities for persons with disabilities, more problems arise. Little or no money leads to poor nutrition, unhygienic living conditions and lack of awareness to protect themselves from accidents,” he says. “There are no facilities of free health, education and transportation which are available in developed countries,” he adds. “Financial constraints and being the mother of paralysed kids has led to psychological issues for my wife.”

Political Empowerment For The Marginalised

After failing to get a ticket from any political party, Yousaf Khan, a social worker with disability contested the 2018 general elections as an independent candidate for the Khyber Pakhtunkhwa provincial assembly. Khan, who lives in Matta Tehsil in Swat, asserts that disabled people should have a political presence. “Unfortunately, there is not a single member of the National Assembly with disability or a senator who could voice our accessibility issues,” he says. “Similarly, in all provincial assemblies you won’t find a member with a disability. Political parties don’t bother involving people with disabilities in political activities, to build their capacity as political workers — anything from working on party manifesto, policies, communication skills, nominating them for political talk shows — or to issue them party tickets before elections.”

Although, he lost the elections, Khan is proud and feels satisfied in the knowledge that he paved the way for other persons with disabilities to participate in politics, to get elected and highlight their issues in the parliament. “My target was to represent thousands of persons with disabilities of my constituency.”

Sheikh says, “In 2013, we requested the mission of the United Nations Economic and Social Commission for Asia and the Pacific [ESCAP] who came to Pakistan to meet Pakistan Bureau of Statistics [PBS] to include Washington Group Short Set of Questions on Disability in the forthcoming census, but our request was not accepted.

During the meeting in 2013, the PBS replied to the inclusion of Washington Group questions by saying that disability was not their priority. These are a set of six questions to identify persons with disabilities in the census or survey format.

Abia Akram, Director Projects at Step in Islamabad, has represented Pakistan’s women with disabilities all over the world. She says, “After the disabled persons’ organisations approached the Supreme Court of Pakistan, it finally ordered the inclusion of four questions from Washington Group Short Set of Questions on disability, in the census questionnaire of 2017.

“Since the order came two days late, the census had started and the questions were written out on a separate paper. And as the workers were not trained, they couldn’t ask the questions properly,” says Akram.

“Asif Bajwa, the chief census commissioner later admitted in a press conference that the questions were added late, and the staff was untrained but he assured us that the sample survey of 25,000 households would be carried out to find the exact number of persons with disabilities,” says Sheikh.

The apex court had agreed to the request made by Step to train the staff of PBS to carry out a sample survey for 0.2 million households. Akram says they hope to get accurate sample data this time which can formulate the basis for planning and mainstreaming of people with disabilities as a concrete step in their development.

Meanwhile Khan emphasises the importance of political participation among disabled persons and says making polling stations accessible for persons with disabilities could help increase voter turnout.

“Persons with disabilities should vote for only those candidates who will further the issues of the disabled,” he says. “In this way, politicians will be pressured to talk about people with disabilities. Active people with disabilities must join political parties and rise to higher positions so that they can influence decision-making at a higher level.”

The writer is a social activist and holds a master’s degree in European studies

Published in Dawn, EOS, December 22nd, 2019