In Pakistan, statistics indicate that approximately 65 per cent of people with disabilities are women and girls, emphasising the need for targeted efforts to address their specific challenges. You! takes a look…
Persons with disabilities represent a diverse and valuable segment of our global community. The International Day of Persons with Disabilities, observed annually on December 3rd since 1992, serves as a reminder to acknowledge, support, and empower individuals facing various disabilities. The theme for 2023, ‘United in action to rescue and achieve the SDGs for, with, and by persons with disabilities’ underscores the collective effort required to address the challenges faced by this community.
The campaign emphasises five key elements of the Sustainable Development Goals (SDGs), including gender equality, climate action, development spending, peace agendas, and multilateralism. It recognises that the intersection of gender and disability creates unique vulnerabilities, particularly affecting the rights and dignities of women and girls with disabilities. In Pakistan, statistics indicate that approximately 65 per cent of people with disabilities are women and girls, emphasising the need for targeted efforts to address their specific challenges.
To foster inclusivity, it is essential to formulate and implement action plans that promote the active participation of persons with disabilities in all aspects of society. This includes not only addressing physical accessibility but also combatting the deeply rooted stigma and discrimination they often face. By fostering understanding, breaking down barriers, and championing equal opportunities, we can create a more inclusive world where everyone, regardless of ability, can contribute and thrive. You! takes a look…
Women and girls with disabilities confront a multitude of challenges arising from the intersectionality of gender and disability. The compounding effects of double discrimination often result in their marginalisation and exclusion from various aspects of life.
Access to quality education is a persistent hurdle, with barriers such as inaccessible facilities and societal attitudes that underestimate their potential. Additionally, healthcare disparities, limited employment opportunities, and economic disempowerment contribute to the challenges they face. Inaccessible environments, both physical and societal, restrict their mobility and independence. Highlighting how girls and women with disabilities face a multitude of challenges, Dr Khalid Niazi, rehabilitation specialist (Rtd.) Mayo Hospital, shared his experience of seeing girls who never went to school because of mobility disabilities. He also stressed an issue that particularly plagues young girls and women from rural areas and that was related to fodder cutting machines. These high-speed electric machines lead to many accidents where girls as young as 12 years of age come to his centre where their hands and arms have been chopped off. As they are putting the fodder through the machine, if they get distracted even for a second, their limbs are stolen by the machine.
Sometimes, just a few days before marriage, girls are brought to him for replacing a missing finger. Perhaps a finger sounds like a small thing but Dr Suhail Niazi, Assistant Professor of Orthopaedics and Consultant Orthopaedic & Trauma Surgeon, King Edward Medical University/Mayo Hospital, recalled a patient who was in depression and almost suicidal. Another young girl whose arm had to be amputated to save her life from cancer and her first question was, what is the point of living without an arm? Thankfully, with psychological counselling, she is doing well now. Dr Khalid shared that one working lady insisted that she wanted to be able to wear heels with her assisted device and they imported a suitable one from the USA. This brought forth the important issue of self-image as well as the society’s role in fighting stigma and discrimination associated with disabilities.
In most parts of the world there are deep and persistent negative stereotypes and prejudices against persons with certain conditions and differences. These attitudes themselves also shape who is considered to be a person with a disability in each society as well as have contributed to a negative image of persons with disabilities. Sometimes, fighting fear and stigma associated with disabilities can prove life-saving. I remember parents of a child who chose to keep the child’s leg despite the fact it meant cancer spreading. There are patients of diabetes who do not stay vigilant about foot injuries and delay treatment that goes from amputation of a toe to a leg and then even worse.
Different prosthetic technology means varying costs and the need is determined based on both physical and mental health aspects. Dr Suhail pointed out that there is a difference between ‘want’ and ‘need’, and as professionals, we guide our patients through the process. If you are dealing with a child with growing limb sizes, or an adult with long life expectancy, or a student who is expected to be physically active or someone who needs to drive or climb stairs; all these factors help determine the need. Then a specialist needs to know the right material and bio-mechanics to make the most suitable prosthetics. A lot of science is involved in the process. Therefore, it is important that to improve quality of life, patients seek professional support and in a timely manner. Dr Suhail pointed out that providing prosthetics is not a one-time intervention. It is a life-long commitment because it requires maintenance after some time. The difference made, he says, is important; it is the difference between dependence and independence. An independent person can acquire education and can work to support his or her family financially. He or she can play an active role in becoming a productive member of society.
Millions of people worldwide face challenges due to disabilities. Although some disabilities pose greater hurdles than others, there are remarkable stories of individuals who refused to let their limitations hinder their achievements. Hearing about extraordinary accomplishments despite obstacles is always inspiring.
Mahzaib , a 7-year-old young girl from Gujranwala, who survived Ewing’s sarcoma, a type of cancer of bones/soft-tissues, and recently completed treatment. In her case, this meant amputation of one of her legs. I asked her mother, “How do you explain to a little girl about amputation?” She replied, “We told her that you’ve got a bad leg and we’re going to give you a good one.” Thanks to that ‘good’ leg, Mahzaib is able to go to school now and her mother proudly told me that Mahzaib actively participates in different school competitions. I saw Mahzaib’s video where she was learning to take her first steps, learning to walk again, using her new leg. Then a few months later, I also saw her video where she was talking to an audience as a young aspiring vlogger. Her journey represents the huge impact of collaborations in transforming lives. This was made possible because of a partnership between Shaukat Khanum Memorial Cancer Hospital and Research Centre, a cancer hospital, and HOPE (House of Orthotic & Prosthetic Excellence) which is a rehabilitation centre.
Mahzaib’s experience inspired me to visit the people who are helping to run the incredible institution. Dr Khalid mentioned to me four main types of disabilities: mental disabilities, visual impairments, hearing or speech losses, and physical mobility related disabilities. Our discussion focused on mobility related issues caused by defects at birth, accidents, or diseases such as polio, cancer, diabetes, etc. He explained to me that orthotics are devices that provide support while prosthetics are artificial replacement of limbs, for example, legs, arms, fingers, eyes, etc. Since opening of his institution in 1989, he has introduced the latest artificial limb technology in Pakistan, and importantly, in an equitable manner, where the very deserving is provided these services free of charge. In addition to technology, his institution has developed an in-house workshop and is training professionals in the field.
Bushra Awan, a play therapist, shared with me her experience of working with children who have lost their limbs after amputation. She said that art can help these children to heal and can help children to express their inner feelings. She showed me a child’s drawing where a dark image was used to depict self which indicated deteriorating sense of control. This is understandable in a hospital setting where children are told what they can and cannot do. Collage work can help restore that sense of control when children can choose to form a whole from bits and pieces that do not mean much in isolation. Each artwork produced by these children is significant because it embodies unique stories of healing.
Another girl, 16-year-old Taqwa Muhammad, who was recently appointed as UNICEF’s first ever Youth Advocate in Pakistan. Despite a spinal condition that requires wheelchair assistance, Taqwa became a karate champion.
She says that stigma in the society motivates her to focus on staying positive and overcoming challenges. Through her story, Taqwa hopes to show the world that physical limitation cannot limit the true potential of an individual and she is committed to help build a more inclusive and equitable Pakistan.
Aligned with the World Health Organization’s estimate that 15 per cent of the global population comprises persons with disabilities, a similar situation exists in Pakistan as well. This group, often the most economically disadvantaged, is among those severely affected by social, attitudinal, and physical barriers and discrimination. To address this challenging scenario, efforts are directed towards vocational education, rehabilitation, the provision of assistive technology, the development of life skills, and early training. These initiatives aim to empower persons with disabilities, enabling them to become active contributors to the developmental process.
Often, rehabilitation is not even included in medical cover, especially in our country. It is considered enough that a person is alive. What if the person is just confined to his house and is unable to reach his or her full potential? What if the person loses his or her will to live? This is where the role of rehabilitation comes and we should acknowledge it. The employers, the government, and the insurance companies, everyone should realise that saving a life alone is not enough and they should ensure that persons with disabilities receive the support that they deserve.
After amputation, ancillary services need to be provided in the process of healing that include pain management, psychological consultation, physiotherapy, and artificial limb solutions. Work places need to be accessible and also inclusive. Organisations should play a role in fulfilling quotas of including persons with disabilities in their workforce and especially help women with disabilities to become self-reliant. I believe the government already has the data for persons with disabilities which is recorded during CNIC registration but the state shies away from taking full responsibility to develop a system of intervention to fully assist and support persons with disabilities proactively.
The Government of Pakistan issued the Disabled Persons (Employment and Rehabilitation) Ordinance issued in 1981 and under this Ordinance National Council for Rehabilitation of Disabled Persons was constituted along with its auxiliary councils working in all provinces to oversee and execute the policy made for employment, rehabilitation and welfare of the persons with disabilities.
After 18th amendment Disabled Persons (Employment and Rehabilitation) Ordinance 1981 promulgated as Disabled Persons (Employment and Rehabilitation) Amendment Act 2012.
I would like to point out and appreciate our First Lady Begum Samina Arif Alvi for taking special interest in promoting the cause of persons with disabilities. She says that it is the responsibility of civilised societies to support persons with disabilities and help their assimilation in the mainstream society. She also reminds us that the reserved quota for differently abled persons in public and private organisations needs to be fully implemented in our country. With such patronage from the top, we can hope that women with disabilities will be involved in decision-making processes and their experiences will be considered and given due attention when developing policies. We also need to raise our voices for making infrastructure and assistive technologies accessible.
The writer is a LUMS alumna and a community social worker with special interest in public health, philosophy, and human rights. She can be reached at mariamk27@hotmail.com.
Her X (former Twitter) handle is @mariamibkhan
