Why Is Advocacy Needed?

“Our world is a neighborhood…We are all tied together in the single garment of destiny, caught in an inescapable network of mutuality. And whatever affects one directly affects all indirectly.”.Dr. Martin Luther King, Jr.

For most people, making your own decisions and choices, is a matter of some considerable importance. It is an aspect of personal freedom that most of us take for granted. Having control of our own life is the root from where self-identity is expressed and a major factor in determining quality of life. We all need advocacy at some time in our lives to help us attain this control so that we can have our say. There are many barriers that people face that inhibit their ability to speak up for themselves.

The following are examples of symptoms or conditions that indicate why some people are more likely than others to benefit from the support of an independent advocate:

Impairment (cognitive, psychological, motor, and sensory): people who do not use words to communicate or do not use formal methods of communication or people who are regarded as incapable of making decisions.
ation: those experiencing family breakdown, and dislocation

Here are some examples of some of the more common barriers facing individuals with special needs and extraordinary circumstances.

Emotional Barriers:

1. · Feeling guilty about something that has happened. For example someone who has been abused may think that others will perceive it as their fault, or a young person may feel responsible for the way they have behaved, or parents who cannot manage the care of their disabled son or daughter may feel guilty asking for help.
2. · Feeling ashamed or embarrassed because the issue a person wants help with is very sensitive or personal, such as being involved with the judicial system or having a mental illness that others do not understand.
3. · Knowing that their view will conflict with other people in their lives who are important to them and they do not want to cause upset.
4. · Not having the confidence or lacking the self esteem to do so, perhaps because of lack of previous experience or knowledge, or just being very shy.
5. · Fear of repercussion when perhaps an asylum seeker or refugee are afraid to speak up in case they get deported back to their country of origin, or if a person is unhappy about the care they receive they may be concerned that the care will be withdrawn if they complain.

Physical Barriers:

1. · not being able to use organizations complaint procedures when something is wrong because they are inaccessible or too difficult to understand
2. · effects of medication that can often leave people unable to express what is in their mind or in same cases not able to think clearly
3. · control of other people such as those who provide care or those who are more dominant
4. · lack of access to appropriate and relevant information and not understanding what you are entitled to, or what your rights are, or who to speak to
5. · not being able to communicate in ways that others understand, because the communication is non-verbal or someone is deaf
6. · being unfamiliar with the language and not having access to interpreters.

Staffing Barriers:

1. · staff do not listen to what the people who use their service have to say
2. · staff are uninformed and unresponsive to concerns and issues
3. · the culture of organizations and institutions does not promote or encourage participation from users of their services

Lack of control
For many people, control over everyday life events is commonly taken by others, for example children and young people in children’s homes or in the care of the local authority; older people in hospital; people with a learning disability in residential homes. Often they are placed in a position where the opportunity for independent decision making is unavailable because all decisions are taken by different members of staff. This can represent for them a loss of perceived freedom.

Lack of adequate support:
Because of the barriers we face, most of us rely on informal advocacy and having support from friends and family. Often people who are seen as being in some way “different”, do not get the support they need, because they have been cut off from the wider community, and any of the barriers mentioned can be a reason why they feel ignored or unable to voice their own views. Sometimes when people are at greatest risk of poor treatment and when they most need to have someone on their side, they do not have anyone available.

People can be surrounded by professionals and agencies, but still ‘alone’ or may have fallen out of the system altogether and be isolated from other sources of help. People may often know what it is they want, but have difficulty in making others understand. Sometimes people have just become compliant and have come to expect so little that neither they nor anyone else is articulating their concerns.

Lack of confidence
Disabled people often do not have the confidence to exercise their rights, as a result of a lifetime of experiencing a lack of control over what happens to them. For many the high levels of support received from their families and service systems, has encouraged them to become passive recipients of care. Day to day choices about what clothes to wear, or what food to eat, may routinely be taken by the carers. Commenting on, or complaining about the support they receive, may be particularly difficult because of the reliance on the same people, and a fear that those services may be withdrawn.

There remains a negative image of disabled people, often being seen as a “burden” on society, or “fit persons for care”. Public suspicion and fear of those labelled as being ‘mentally ill’ or having a learning disability is commonplace. It is perhaps understandable then that these prevailing attitudes result in low expectations, segregation, and a lack of opportunity and experience for many.

Lack of knowledge
Our society has made great progress over the past twenty years in the form of legislation and in our attempts to facilitate access for people with disabilities. Along with this progress comes a plethora of details, regulations, restrictions and rules. Technological advances and new ways of desiminating information have helped some but for others, access to information is still a serious concern. Individuals with cognitive disabilities, senior citizens, children and those with low incomes are often “off the grid” and unable to access information, resources and services. For many, process of finding proper and affordable services and information is daunting if not impossible.

In any of these situations, more formal advocacy support can make a real difference to the lives of people facing a variety of personal challenges. Though not previously mentioned, the labor movement of the early 20th century faced many of the same challenges; Lack of control, lack of support, lack of knowledge and the inability to have their perspective heard. Many of the concerns regarding the emotional, physical and staffing barriers previously mentioned in regards to the disabled were shared by american factory workers at the turn of the century. Today, most of our major labor unions share common roots, perspectives and values with civil and diability rights advocates.