Stages of Identity and Acceptance: Recognizing Our False Perceptions of People with Developmental Disabilities and Working Towards Inclusion

identity_crisis-291x300  When you hear the word “disability” what images come to mind?  When you see someone who has trouble walking, speaking, dressing, or even feeding themselves, how do you chose to relate to the person?  What, if anything, is your church doing to address the specific needs of someone with a learning disability?

Over my three years working in the developmental disability field, I have begun to see a variety of ways people respond to those who are less able-bodied than they are.  After much thought, I have decided to compile a list which I hope will enable you to begin thinking about where you personally would align yourself.  It is important to note that identifying ourselves on the continuum is not a “be-all-end-all” result.  In fact, my hope would be that as you gain more experience, you might begin to progress through the stages.  I also acknowledge that due to our own limitations and the false perceptions society places on us, we can quite easily regress at times.  It should be understood that you might not always relate in the way you wish you could, but at other times you might surprise yourself.  Ultimately, however, it is my sincere hope that by creating this continuum we at least can begin a conversation within ourselves and with those around us as we seek to become more inclusive of all we meet regardless of their perceived abilities.

  • Disgust: It is a sad fact, but many people simply do not know how to relate to someone with a developmental disability. These individuals may respond by intentionally distancing themselves or avoiding contact with someone different than them.  In rare occasions, they may even insult or use language that tears someone down.  They might choose to only speak to the carer or the parent rather than the person with a disability themselves.  They may even polarize the situation with an “us” versus “them” mentality or fear that the person with a disability may become violent or aggressive and thus restrain their children from coming too close.  At first glance, this may appear to be completely absurd behaviour, yet sadly, this is where I have found the majority of people who have no experience with adults with learning disabilities would find they align themselves.
  • Pity: I sometimes hear people saying “I don’t know how you can work with people LIKE THAT (disgust). I just get so sad even thinking about them.”  These people often have no concept of what it is like to work with someone who has a disability and they live in an ablestic mindset believing that the only people who can truly enjoy a good quality of life are those who are just like them.  Pity might appear in the form of sad looks, words of consolation and comfort (even when not called for), and a general uncomfortableness or awkwardness.  This is most prevalently found when a parent gives birth to a child with a disability.  People may encourage the parent to try again or express a sense of disbelief or sadness rather than allowing the parent to embrace the unique joy and challenges this child will bring into his or her life.  This can also come in the form of extreme patronization.  This is a fairly frequent response as many people will use phrases such as “aww… that person is so cute” (even when the person is a full-fledged adult), or else the person’s voice might chance to resemble how you might speak to a baby or a toddler.
  • Curiosity: This is the stage that I have found a number of my friends in. Although they may not want to live and work alongside adults with developmental disabilities themselves, they might be curious to at least hear more or visit such a person.  Many of my friends have expressed interest in coming to L’Arche because they want to see how we function as a community although they personally have no vested interest in the field (which is totally fine – God has called us each to different tasks!!).  Curiosity might mean a timid question to a person with a disability here or there, interest in learning more from a theoretical or practical viewpoint, or a desire to begin questioning their own prejudices and past misunderstandings.
  • Toleration: Toleration is the first real stage in making life accessible to people with learning disabilities. In this stage, church leadership might acknowledge the presence of people with disabilities within their congregation and might even casually ask how to make the church more accessible.  Others might turn a blind eye to disruptive noise, repeated questions or phrases, and incontinence issues.  However, although this is an initial step, it does not go further.  It does not actually take into consideration how to fully include a person with a disability into the life of the church or organization or how to form an intimate friendship with him or her.
  • Butlership: This is the type of relationship which sees itself as constantly DOING something for the other person. It can appear genuine, as a form of service, however, if taken to the extreme it creates an unnecessary and unhealthy form of co-dependency and burn-out.  It is the type of attitude that still feels superior and that believes people without disabilities can still contribute more to church life than those who do.
  • Acceptance: Acceptance is the stage in which people with a developmental disability are finally beginning to be understood and appreciated. In this stage, people are affirmed, spoken to as equals, and embraced into church life, perhaps even asked to help out in various way.
  • Inclusion: Inclusion means allowing the person to give their input and opinion on various subjects. It involves permitting people with disabilities to serve on all levels of leadership (as much as they are able), and creating programs where all are invited to participate rather than where segregation occurs.
  • Friendship: This is the stage that many who are part of L’Arche often find themselves in. It is a place where you begin to see that it is entirely possible to form friendships with people who are different than yourself.  In some cases, these friendships can be long standing and unique to the point of you realizing you cannot function and exist without them.  At this stage, you include the person in your conversations, you invite them to your birthday party (and really mean it!) and you think about their preferences and needs.  If you see something that connects to their hobby, you get it for them.  You may even introduce this person as “my friend” rather than “my client” or “my service user” (it is important to note that although friendships can and do happen within L’Arche or any other organization, they should not be forced.  Friendships with people with learning disabilities should happen normally and naturally – just like with any other friendship.  You should not claim to be friends with someone just to look good or because you feel an obligation.  It is important to give the friendship time and space to develop and see what ends up enfolding rather than try to smother and force anything).
  • Co-Labouring: In this relationship, we begin to work alongside adults with developmental disabilities. We affirm each other’s unique gifts, skills, and abilities.  We do not allow ourselves to do everything for the person, but rather we find ways to include and incorporate him or her into all aspects of what we are doing.  We plant a garden, cook a meal, go grocery shopping, or take out the trash together.  We work on projects together.  It becomes less about DOING things for one another and more about simply BEING in the presence of one another.
  • Mutual Sharing, Growth, and Leadership: This is the level to which we all aspire, but few have obtained. It is a constant learning process and you definitely cannot arrive here over night.  This level believes that there are things to learn from one another.  Although there may be days when your patience is wearing thin, you also recognize your own limitations and that the other person also has to be patient with you.  You stop trying to teach the other person, and begin the process of wanting to be taught.  You see how you can be moulded by a person with a disability and you submit to the possibility that he or she has a secret knowledge you may know absolutely nothing about.  You help lead each other.  You participate together in the breaking of bread and prayers and you wait to see how God is moving in each one’s life.

 

We all have blind spots and it is impossible for us to respond the way we would like all the time.  However, I hope that this brief overview has enabled you to begin thinking of what you are doing correctly and what could be better in your interactions with those who have developmental disabilities.  May God bless you as you journey into a closer communion with Him and with our brothers and sisters who have different abilities than we do.

 

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