Sticks and Stones: Are words really that important?

There has been so much advocacy for person first language and yet we still read about the “disabled children” instead of children who have a disability?

My friend Jane’s biggest pet peeve is the term “handicapped” and she cringes when people say “handicapped parking space”. The term, I believe is accessible parking space, is it not?

The media is a huge culprit for not using person first language, but I have also heard the faux pas from professionals and parents too. In their own defence, people will say that they mean no harm or disrespect, and they ask “are the words we use really that important?”

So I will ask you the same question. Are the words we use really that important?

Parent vs Parent: What happened to what we have in common?

My parent partners and I, like many other parent leadership groups, have worked so hard to support a “parents helping parents” model. We believe that families can be strengthened by others who share a similar life experience. The emphasis was never about whether their child’s diagnosis or disability was the same. It has been more about sharing ideas and tips that would make coping a little bit easier, to know that they are not alone.

Until now.

Lately I have heard parents comments from parents that have made me feel rather uneasy.

Here is parents are saying:

“If you don’t believe in full inclusion, then you’re not making good decisions.”

“If you believe in full inclusion, you haven’t considered reality.”

“If you want your child to have specialized instruction, you are not supporting inclusive education.”

“If you don’t approve of my child having specialized instruction then you’re not supporting him to reach his full learning potential.”

“Why is there such a focus on Autism?”

“We parents that have kids with Autism have had to fight for what we are getting because we haven’t had anything. We need to be in the forefront.”

“Agencies and organizations are way too costly and they take direct funding away from my daughter.”

“Agencies and supporting organizations have helped our family so much, I don’t know what I would do without them.”

You see the picture? Is it just my perception or is the parent to parent link getting more competitive rather than supportive? What happened to “we’re all in the same boat, so let’s help one another get to shore?”

I wonder how this could have happened. Is it because government funding has become so inadequate that parents have been forced to battle one another rather than to support each other? Don’t parents have enough stress and challenges in their life, never mind having to fight each other for government funding? And if you listen closely, really closely, the battles turn out to be more about “who won” rather than what’s best for our children.

I am looking for ideas to help parents find a common message and get back on track with supporting one another, rather than fighting for the government’s attention and for funding. What is our common message and how do we make sure that all children, people and families alike receive every bit of funding and support they need?

To speak or not to speak

I was involved in two situations today that touched on communicating with individuals who have an intellectual disability.

The first was a discussion about finding tools or strategies for communicating with someone who does not use speech or verbal communication. There was some brainstorming about who to contact or where information could be found for ideas about non-verbal communication.

As a parent that had a son who did not speak I was very much intrigued by the conversation and I was very impressed by what one of my colleagues had to say. She very simply said that it’s not always about finding a formal strategy for non-verbal communication but it was more about getting to know the personal and understanding their individual way of letting you know when they are happy or upset or how they express what they want.

The second situation involved me having to call an individual who had volunteered to be on a committee. I had never met this person and wasn’t sure if she spoke or could use the phone. Knowing that it was very important to be respectful about this I was very nervous about using the right approach. And since I’ve been a leader in the accessibility movement and provide sensitivity training, I put even greater pressure on myself to make sure that I did everything right.

When I made the call, the individual’s parent answered the phone. After I stumbled on my initial introduction and told him why I was calling I let him know that I had never met his daughter and I wasn’t sure if she was comfortable speaking on the phone. So quite brilliantly I asked him “does she like to talk on the phone?” His response was “yes” and I quickly relaxed. “Whew” that was easy! After the conversation I reflected on the moments before I made the call and could appreciate the difficulty that someone might have if meeting someone for the first time and they’re not sure how the person may communicate.

My solution was to approach politely, be honest and don’t try to fake your way through. Ask when you are not sure. Any further ideas?

Funding for Support: Who’s responsibility is it?

I continue to hear from parents whose son or daughter is on the brink of finishing high school and entering the world of adulthood. Their stories are very similar, mostly saying “I don’t know what we’re going to do. We have been turned down for funding. I don’t want to quit my job and we can’t afford it. Yet without support for my child, I don’t know what else to do.”

The more stories I hear about, the more frustrated I become. Ensemble, along with many other groups have tried numerous approaches to get this message to government, and while they listen to us with empathy, there is no change with regard to funding.

Some people question how much responsibility the government should take on this matter and that families should be encouraged to concentrate on financial planning for their son or daughter’s adult life.

While this may have some merit, I still question the fairness of having parents invest enough money to support the entire lifespan of their son or daughter. It’s true that nowadays many parents invest for their child’s education and maybe for a wedding or graduation gift, but it’s not typical that parents invest for their children beyond that.

Who’s responsibility is it to provide enough funding to support individuals with a meaningful life? How can we convince government that their responsibility is much greater than what they are currently providing for?

I want a good friend

I met with a parent the other day who said that she feels very alone and isolated. Her son was diagnosed with Autism about 6 years ago and life has been quite challenging for her family ever since.

The family has good in home support and her son goes to school, but the one thing that is missing in her life is friendship. This particular mom does not drive and she doesn’t live on a major bus route, thereby adding to her trap.

Friendship is not usually a topic of conversation between service providers and families. Is asking about friendship considered to be too personal of a question?

I know from experience, and so do most parents that have children with a disability, that feeling alone and isolated is one of the biggest challenges we face.

When Eric was very young I remember feeling so alone and saying that I wished we all still lived in small villages and that women didn’t work, all because I wanted to be around people and wanted lots of people around me.

We know that friendship is important for all of us. What kinds of things can we provide to parents or what suggestions can we offer that may generate more opportunities for friendships?

Parents in our situation can often feel trapped and see no way out.

Should I say something?

When it comes to not being satisfied with support, services or school, so many parents have asked us this burning question, “should I say something?”

Our reply is always a consistent “yes”. If you don’t express how you feel how will things ever be improved?

Parents often feel like they’re asking for too much or that they should give it more time. Many parents have said that they don’t want their son or daughter to be poorly treated if they complain.

We have a couple of responses to that. First of all, it’s not complaining, it’s about improving and strengthening a situation. Secondly, if the people would mistreat their son or daughter after a parent expresses concerns, those aren’t the people you want with your child in the first place.

To share concerns or ideas about a particular situation we always encourage parents to pick the top 2 or 3 most important things they want to address, write them down, ask for a meeting and stay focused on what you want to discuss.

If we don’t say anything, how would we ever get better? Any other ideas?

Family Leadership: The concept is catching on!

I’m on a writing roll today, but I have so much to say that I can’t help myself!

As I mentioned in another posting, Jackie and I were at the CACL Annual Conference this past weekend. One of the main items for discussion and development at the conference was “Family Leadership“.

“Wow! That’s great” I thought. When I first became a Parent Consultant over 12 years ago, the term for parent leadership was primarily “parent advocates”, used to describe parents who would speak up for their sons or daughters, who would go into battle if needed and simply, parents who would advocate on behalf of their children or other families. Parent to parent groups were very much about “speaking up” so that our sons and daughters would have a better quality of life and so that they would have a place in society like everyone else.

We at Ensemble have always believed in family leadership. Rarely did we ever use the term advocacy, not because we didn’t believe in the importance of it but because we wanted to make sure that our contributions toward a good life for our children were recognized at the same level as leaders in education, social services and health care. We wanted to be viewed as colleagues and partners who shared a very positive relationship with our community.

We believe that a trusting relationship leads to the best outcomes for our sons and daughters. Working alongside professionals is somewhat of “in house lobbying” where you understand each others perspective and try to find a balance among all points of view. Family Leadership puts us on the same level with regard to decision making. It means we can work together and have influence.

I am so excited to see that others are starting to use the term family leadership. I hope that we have created some of the inspiration toward this movement. As a leader in family leadership, I look forward to connecting with other families and being part of the ride!

Relationships are most important

Jackie and I attended a conference hosted by the Canadian Association for Community Living this weekend. One of the sessions we listened to was about early learning and child care. The presenter was Dixie Mitchell from the New Brunswick Association for Community Living.

With regard to early learning, Dixie mentioned that relationships are very important. She further explained that children learn in an environment of relationships and that school readiness is about socialization, celebrating one another, building communities, friendships and democracy, determination, autonomy, acceptance, respect and belonging.

My mind went even further and realized that all of these principles of school readiness was also important beyond early learning. All of our lives are based on these very important qualities.

I agree wholeheartedly with Dixie regarding the importance of relationships in early learning, but I also want to challenge us to continue the emphasis for relationships as our children enter elementary school, high school, university and their professional careers. I want all of us to think about the relationships in our lives and how can we strengthen them.

Can we strengthen our relationships to create more positive outcomes for all of us?

Families know what they want

I witnessed an interesting conversation last week. I was involved in a staff training event and the focus was about respite for families. My role was to facilitate a panel of parents to share their perspective with staff and offer any tips that would strengthen relationships among parents and support workers.

After hearing the plight of families and why respite and a much needed break was so important to them, one of the staff held up her had to ask a question. With very good intentions she asked “when are you and your husband going away for the weekend?” She commented further ” You really need to go away”.

The mom looked at her and very politely replied ” actually, my husband and I don’t want to go away. We very much enjoy our home and just want to relax there.” She continued to describe that “clothing was an option” and we all stopped the conversation right there!

On a serious note however, the lesson learned was very important. Most support staff really empathize with parents. They feel for the extra stress we endure and certainly appreciate the need for a break. In this situation, we know that the staff person had very good intentions. It’s just really important to not assume that you know what a parent needs or wants. Is there another way the support staff could have communicated her idea to mom?

Government Funding: From Benevolence to Essential

I was at a meeting today where the discussion was focused on how frustrated parents are as a result of the inhumane lack of funding for adult individuals who have a developmental disability. The wait lists for service and funding are horrifying and horrendous and as a result many of their sons and daughters are left without anything to do in their adult life. Families face a tremendous amount of stress, sometimes having to quit their job in order to support their son or daughter. They don’t know where to turn and they just don’t know what to do.

As the discussion continued, a comment was made that “any support that families get from the Ministry of Community and Social Services is at the benevolence of the government.” In other words, if the government continues to feel kindness and compassion towards families, they will continue to fund programs that offer valuable support to families. Kindness and compassion? This is ludicrous.

Many of their children have a severe and/or a very complex disability, which is often compounded by mental illness or fragile health. This translates into parents are over-stressed, exhausted and weighed down. Families cannot balance such a load and the overall health and well-being of the entire family is at risk. And we are at the mercy of government funding. Give me a break!

Enormous amounts of funding have been provided to advancing medical technology and medicine which have helped to sustain the lives our children, but to increase funding to help support our children and maintain the integrity of the family is unheard of these days.

Families remain oppressed and overloaded, potentially resulting in family breakdown or a decline in their own health. Something must be done. We must convince the government to change the value of funding for supports from that of benevolence, kindness and compassion, to necessity and essential service. How can we accomplish this challenging piece of work?

What's Wrong with This?

Why is it that whenever we mention that we have a family member who has a disability, people ask “what’s wrong with her?” “What’s wrong with her? What’s wrong with you?” you want to say. Why does everyone think that having a disability means that there’s something wrong?

People may have challenges or a diagnosis that result in result in a variety of abilities, but it doesn’t mean that there’s anything wrong with them. That sounds so horrible.

Isn’t it better to realize that we all have varying strengths and abilities; that’s what makes us individual?

I heard a story the other day about a group of colleagues engaged in a discussion about children who were born “less than perfect” and how a young girl immediately gave her child up for adoption when she learned that her daughter had a very noticeable, “deformity”, on her face. “What?” I asked with complete horror. “You’ve got to be kidding me?” I replied. “Is this what people do when things don’t go according to plan?” I thought. “Is this the result of a society that views diversity as something wrong”?

When we meet someone who has a disability, I hope that we hear less “what’s wrong with her?” type of questions and more people saying “tell me a bit more about her” or “I’m interested in knowing more about your situation.” We have to encourage people to embrace the uniqueness of each and every one of us and to realize how much fulfilled our lives can be when we embrace diversity. Otherwise, there is something wrong.

Isn’t that “retarded”

The other day I was talking to an acquaintance about places to visit in Canada. She had mentioned a city where she and her family had lived when they emigrated from a foreign country a few years ago. She said that she liked what the city had to offer but she wasn’t too pleased about the way the people treated them. She said “they looked at us like we were retarded”. “What was that?” I couldn’t believe my ears! I suddenly found myself in one of those, “do I say anything moments, or do I let it go?”

After a brief battle with my inner conscience, I chose to let it go, but the conversation stayed in my mind all day. What was she really saying? Was she saying that it was awful to feel discrimination as a newcomer to Canada but that it was okay to experience discrimination if you had a developmental disability?

For over 50 years individuals who have disabilities and their families have been advocating for society to value their lives, to value their contributions and to have rights as full citizens. Yet this comment it made me realize that society is still not there. What else do we need to do so that people realize the value in all people?

Sticks and Stones: Are words really that important?

The government of Ontario is revising the Developmental Services Act ,

www.ontla.on.ca/bills/bills-files/39_Parliament/Session1/b077.pdf

that relates to the provision of services for individuals with developmental disabilities.

The new Act provides a new framework for the provision and funding of services to , or for the benefit of, persons with developmental disabilities. The Act addresses:

• the elimination of allowing the Ministrry to operate institutions
• a guideline for the provision of services
• the creations of application centers for people to access funding and services
• the option for traditional funded services or direct funding
• outline to service agencies for the operations of services
• allowing the Ministry to inspect services
• data collection

The Standing Committee on Social Policy is hosting consultations for the proposed Bill during the week of August 5-8th and the Ensemble team shared their perspective to the committee on August 6th in London, ON. Here is what we talked about:

Random inspections do not respect the privacy of individuals in their homes. Although the homes may be operated by an agency, they are considered to be the homes of the people who live there. A random inspection is an invasion of privacy.

The provision of services for individuals who have disabilities should be an essential service and therefore waiting lists should not exist. All persons should automatically receive funding for support according to their individual request. All funding should be flexible and respond to changes in a person’s life accordingly.

While direct funding is an appealing option and may be appropriate for some individuals, we should keep in mind that we don’t want to set up a support system that may isolate people and become "we vs they" in nature. We believe that each person should direct their own lives but also realize that they don’t have to do it on their own and that agencies and organizations are there to offer their support, experience and assistance.

Although The Act states that is providing services that are "a benefit" to people, this still reflects dependency. We would rather see the government become "responsive" to people which would encourage independence and empowerment.