My name is Msafiri Ngololo and I am from Tanzania. The desire to have a disabled leadership career led me to pursue a Disability, Design and Innovation masters course; in order to create change, influence inclusion in social policy, identify and remove the disabling barriers in my home country and Africa at large.
Disability is a wicked problem
As a proponent of inclusion and self-representation of people with disabilities I consider disability is a wicked problem (it is a problem which is seen with an eye of difficult or almost impossible to be solved); even a literal meaning of disability is “difficulty with ability”. That implies it is a challenge whose solution is hard, complex and does not have a straightforward answer in some situations and context as it is a cross-cutting issue.
To illustrate this wicked problem, I can refer to my country. Challenges of people with disabilities are discussed daily in different occasions among disabled individuals, the parents, the family, the community and the government.
Recently, the government decided to deal with the problem of street beggars; many of these beggars are people with disabilities (PWD). The aim of that exercise was to protect the interests of people with disabilities and improve their lives. The media showed how some non-disabled people have infiltrated themselves in the begging business with some bad intentions of using disabled individuals as instruments of collecting revenue for other people. It has been stated that, non-disabled individuals have been transferring people with disabilities from their rural settlements in various regions. They deceive, seduce and bring them to the city of Dar-es-Salaam, providing temporary shelter for people with disabilities in places like guest houses.
In the guest houses they are provided with shelter, food and an assistant person to help them in moving with their wheelchair around the city, they are subjected to involuntary begging on the streets to earn money. In this exercise, people with disabilities receive money from Samaritan people. The view of Samaritan majority is that they are giving their help of money to enable people with disabilities to survive and reduce life hardship. Contrary to that; “under the carpet” every day these agents of people with disabilities use disability as a ticket of earning income, as they take the given money for their personal gain. The money given is misused, such acts have been seen as an act of humiliating and violating rights of people with disabilities.
Despite the good intention of the exercise of the government to combat the problem of street beggars and protect the dignity of people with disabilities, the community is still left in a puzzle without answers to some issues. In my observation, it can be a useful idea if that exercise of protecting the dignity of people with disabilities is sustainable.
As I reflect, I noticed that the majority of the victims who were ensnared in the beggars’ exercise were carried on buses back to their original homes. When you look closely, the challenges which these disabled beggars observed and experienced in their own families are the ones which influenced many of them to accept the temptation to leave their homes.
In my view, the act of repatriating them is not a sustainable solution that gets to the root of the problem. It is still a wicked problem. Because, despite such initiatives still there are many unsolved challenges of infrastructure, lack of income, lack of employment, lack of business capital, poor access to education, transport and absence of assistive devices for people with disabilities. These need solution apart from and in addition to dealing with challenges of street beggars.
Alternative sustainable solutions include: developing technical colleges for people with disabilities, providing unconditional loans fund, improving infrastructure and considering education provisions for those children with multiple disabilities, using a human rights based approach. This will help many people gain skills, knowledge and income and become part of the citizen who participates in building the country economy. This can assist in proving wrong the negative community attitude towards disabilities. Implying that inclusion of persons with disabilities into leadership and all parts of society is a desirable and necessary societal task.
Benefits of disability leadership
Personally, I believe that people with disabilities are among those gifted with a wide range of talents and creativity. Despite being a group of people who have been exposed to a wide range of life’s struggles; they are people who are capable of solving some of the barriers they face. Therefore, the involvement of people with disabilities in leadership and development movements is of great importance. Though, society has been sceptical about people with disabilities, they believe PWDs cannot make a meaningful contribution. However, given the fact that, decisions made by the community and the government directly affect people with disabilities; it is necessary for them to be heard as they have the right to participate in leadership, activities and the conduct of society as a whole.
Therefore, people with disabilities deserve to appoint or elect their representatives in decision making bodies. They deserve to be represented with their fellow disabled leaders, as well as being educated, appointed or elected. Disabled leaders are not passive they are ACTIVE. They can ACT for visibility, development and welfare of the present and future generations of people with disabilities and the society in general.
Disability should not be used as an excuse to deprive disabled leadership. Individuals with disabilities deserve to represent themselves and participate in leadership, policies and development programs. Individuals or authority must remember that people with disabilities are people first, their disability does not define, nor does it limit their potential.
There have been many discussions around disabilities and leadership, dominated by a negative attitude about the capacity of people with disabilities and the possibility of involving them in leadership position. It is important to stress that having more disabled leaders is fundamental.
Disabled leadership is vital for enabling disabled people to be included in all aspects of life, and for guaranteeing their social participation. Disabled leaders can serve as a liaison with organizations and institutions providing services to people with disabilities. This can assist along the process, conveying message to development partners and policy makers.
Disabled leaders also can inspire others, including the parents of children with disability. This can motivate them to remove barriers facing their disabled children, and assist in maximizing their potential. Furthermore, it can help the community at large to realize that disability is not a tragedy, but it is a normal part of human diversity.
Although policies and laws for people with disabilities are in place in various countries, they often gather dust without practical action, while people with disabilities continue to suffer. Such challenges justify the importance of having disabled leaders. Our presence can assist in increasing, motivating and creating an enabling environment for inclusion, improving infrastructure that promotes equality for all.
Disabled leadership helps people with disabilities to be fully involved and their issues to be addressed at decision-making level. Disabled leaders contribute to changing perceptions, helping the community realize the importance of having unique perspectives. It enshrines the effective and meaningful participation of people with disabilities and helps in disabled people to express themselves, recognize need, articulate their perspectives, evaluate services and advocate for change and community awareness.
Leadership that includes people with disabilities is important; it helps in solving the problems of people with disabilities, including those problems related with outdated legislation, insufficient political representation or simply inadequate data. The involvement of people with disabilities and discussing issues of people with disabilities in various development forums makes it easier to identify the source, results and challenges they face and identification of their abilities.
Therefore, having disabled leaders, disproves this lie about disability. People with disability (regardless of their diversity) deserve to represent and speak for themselves, as other human beings, they possess their unique personal ideas, potentials, thoughts, feelings and contributions.
My Experience with disabled leadership in the UK and Tanzania
Travelling in the UK from a lower middle income country (LMIC) (where support for people with disabilities are either non-existent or very limited), I felt happy and at ease with the various disability support I observed and witnessed being made available in the UK. I consider that such a situation happened as a result of the presence of active law, and a system of representation of the welfare and well-being of people with disabilities.
I participated as disabled leader at my university, I observed and used different services smoothly, such as the provision of ramps in different bus and train stations for those who use wheelchair; the provision of lifts and accessible bathroom facilities across campus; accessible roadway and public places; availability of sign language services for the deaf in different occasions; and events.
Observed Problem in disabled leadership
Before embarking for this Disability, Design and Innovation course, I have spent more than seventeen years’ in Tanzania working with a community of people with disability (PWD’s). I did a lot of social activities around people with disability, that contributed to my understanding that people with disabilities are mistreated, despite a fact that they deserve to be treated with dignity.
In my experience, I have observed that the majority of people with disabilities are powerless. This is influenced further by poverty and lack of political will in some countries to recognize disability inclusion. People with disability are less understood and more vulnerable to experience discrimination than other groups.
Disability has always been considered a barrier to inclusion, causing many people to suffer not only because of their disability but also for social reasons. Negative attitudes limit their participation in society, and some government still do not consider inclusion of disabled leaders. This leads to the development of public policies and programs that are not responsive, not effective and contributes in hindering rights of people with disabilities.
Add to that, some people in the community are still not comfortable in their hearts about giving people with disabilities leadership opportunities, for example people with hearing and communication difficulties (Deaf) in Tanzania has never had a chance to act as representative in parliament since 1961 when the first government come into power up to the present fifth term government.
It is a good idea for every type of disability to have a representative in organs like parliament because the groups of people with disabilities are not homogeneous, they are heterogeneous. The act of having a representative with the same type of disability has its consequences; because the same person can become incapable of recognizing different needs and challenges of all groups of people with disabilities. Therefore, it is necessary to make a mandatory of constitutional leadership to the marginalized PWDs by having representatives in their five respective groups of DPOs. For instance, this can apply to those representatives with physical disabilities, albinism, blind, deaf and mental disabilities. This should be considered as a constitution or legal need as it is considered in special seats for women.
In other occasion, when seeking leadership opportunities; people with disabilities in general have been facing the challenges of corruption as they opt to compete for leadership. Sometimes, people with disabilities indicate a willingness to compete for position, but when they come with empty hand (no money), they are openly told that “an empty hand does not deserve to be given even a single vote.” In such a situation, they can decide to withdraw early in the competition because the majority experience poverty. In such way, they aware of the fact that they cannot go farther forward in the competition process. The only possibility of being representative has been through special seat which are very few and does not consider the different kind of disability.
Though, the challenges of lack of representation and funding do not only apply to people with disabilities; it affects a large number of people living in poverty. Nevertheless, various theoretical sources confirm a fact that that there is a strong link between poverty and disability. As a result, it has become rare to have a balanced representation of a group of people with disabilities in leadership due to the vicious cycle of poverty and disability and multiplicity of phenomena including disease, discrimination, conflict and civil strife. As a consequence of poverty and exclusion, many disabled people in LMIC remain less successful and less impactful as compared to non-disabled people.
In some instance disabled leaders are blamed for being selfish, it has been stated that once a person with disability gain a chance to get a leadership position, most of them tend to forget the group of people with disabilities. They fail to defend people with disabilities in different opportunities or advocacy. Others do not even set aside time to visit DPO to hear concerns of people with disabilities as they avoid to engage in DPO dispute resolution.
Disabled leaders as other members of the community have a lot of talent and potential, but stigma can cover people’s eyes so they only see what is negative. From my experience, as a participant and observer in my country and abroad, I believe it would be helpful for stakeholders of people with disabilities to form a global DPO (Disabled Peoples Organisation) leaders network with a unified goal. This could assist in influencing governments to be inclusive through advocacy, lobbying and sharing best practice of disabled leaders globally.
In Tanzania the biggest priority is to have an enabling and better environment. Having such environment will enable a community of people with disabilities to participate in the life process, something that will enable us to excel in education, skills, work and life which are healthy and of quality in additional to active policies and legislations, I believe that will assist to overcome this challenge of mistreating the community of people with disabilities. Furthermore, there should be a good strategy of looking at all groups of people with disabilities in parliament representatives for instance. In the sense that people with disabilities are not homogenous, they are heterogeneous. They should be given opportunity to choose representative candidates according to their diversity groups of disabilities in their respective association of representation. Representation of people with disabilities themselves helps in identify their needs, articulate their perspectives and priority, evaluate services and advocate for change and contribute to raising community awareness.